Childhood Cancer Awareness

Did you know that 46 kids will be diagnosed with cancer everyday?  Today, tomorrow, the next day, the day after that....46 sets of parents will be literally knocked to their knees in despair and in prayer for their child.  Noone should ever have to deal with cancer.  I know.  I watched my Mom lose that battle.  But really, NO CHILD should ever have to do it.  It makes my stomach turn.  And now, lots of my friends have cancer kids....all these people that I have met along the way.  Some are near and some are far, but the 46 number to me....well it is just that much greater because I am somewhat surrounded by it.

Just in the last two weeks, our little friend Katie (with ALL) relapsed.  Another little child with ALL (whom I had been following online for months, but did not know) lost her battle this weekend.  A friend of a friend had her daughter Brooklyn diagnosed with ALL down in Cincy.  And nearest and dearest to my heart, our friend Caulin left for Cincinnati to have his bone marrow transplant.  He will likely not be sleeping in his home (3 doors down from me) for over 100 days.  I had to hug my sweet Caulin goodbye and quickly turn so he would not see the tears rolling down my face.

Right there it is. Four examples of ALL.  Acute Lymphoblastic Leukemia.  The "good" cancer as I have seen it called.  Hmph.

And Ally...I pray she continues to do well.  She got her first "illness" since being off her treatment about 12 days ago.  Her first regular old child-like stomach flu illness. She vomited for about six hours and was done.  I didn't think I would get so scared.  But her father and I have been worried about her ever since.  Constantly asking her if she feels ok.  Checking her lips to see if she looks pale.  Is she sluggish?  Is she sad?  Why is she waking up at night?  Pleading with God that it is not coming back.  It is one thing for me to worry...it is another thing when Dad amps up his worry.  We went back and forth...should we have her blood tested? Should we not?  It was just tested 7/25 and she got a good report.  Well we decided to let it go.  We just let our faith keep us going.  She seems better to me.  She even did a basketball open gym tonight.  But as a cancer Mom, I can just sit her replaying a thousand things in my head and keeping myself up half the night. Her next blood test happens to be the first day of school.  I am counting the days until her blood test.  I just need a little reassurance right now.  All the things I mentioned above don't help matters any!

So anyway, I am asking Ally's Army to walk in the Curesearch Walk again this year.  It will coincidentally be the one year mark off of treatment.  It will be Saturday, Sept 22.  You can sign up to walk (or just donate) here. Please consider signing up to walk.  If you live afar, you can sign up to be a virtual walker....or just donate to a wonderful cause!

Link to sign up:
Curesearch Walk: Ally's Army

Walk for Ally. Walk for Caulin. Walk for Katie.  Walk for Taylor.  Walk for Brooklyn.  Just walk and pray and walk and pray that we can put an end to this disease.

A fellow cancer Mom made a video of all the Dayton kids for the Curesearch Walk.  So now, not only do I have to see my own child's face in this video, but I see that of my best friends.  And many many other friends who I love so much that I met along the way.  You can watch the video here.  Not trying to make you sad....(but it will!)...just trying to make some small difference as I have tried to do for 3+ years now.

Press Play.

Thank you Ally's Army!  Please continue to pray for Ally and Caulin and all our kids!

Summer Fun

I knew it had been a while since I had updated the blog here!  When I logged on tonight I realized exactly how long. YIKES.  So much summer fun time going on which makes for a tired Momma at night.  I remember the days well when I sat down nearly every single night and wrote something up on how Ally was doing.  Just keeping everyone in the loop but more importantly writing the story for her and I so we could always look back.  Our days are very different now.  We are focusing now on having a fun summer.  The kids finished up the school year well ...I am proud of both of them for their school achievements about all else...and now we are into going to the pool several times a week.  We have also taken a weekend trip to Chicago to see my college friends (love them so much)....done some golfing....some fishing...visited with our old neighbors who came to visit....movies....lots of swim meets....badminton....time with both of our families and our friends.  It has really been so good.  We do not ever forget from where we came from and I am always so grateful for these times because we had so many days when we couldn't do the fun things because of Ally not feeling well. 

Speaking of not feeling well, lately we have still spent some time down at Dayton Children's as our friend Caulin has been doing some inpatient chemo.  This last weekend he was in and I think we went down Thursday, Friday and Saturday...and then he came home Sunday.  Of course we all love Caulin and want to help him pass this time away from home.  But Ally is just so ultra sensitive to it all...she wants to be down there all the time with him.  Asking to go, never wanting to leave him.  You would think she would run the other direction from the place.  But NO.  She knows.  She understands.  When she did her inpatient chemo, visitors were not allowed...not even her brother and sister.  We were really trapped in there for most of the fall.  She remembers and she doesn't want him to be trapped like her.  I love that they have this kinship with each other and I love that her heart is so full of empathy for her friend.  She even baked some cupcakes for him and took all the things with her so he could decorate his own.  Her idea.  Totally her idea.  Of course she knows almost all the nurses and aides and such and I do think they enjoy seeing the fruits of their labor down there.  Ally...all her hair....feeling well and looking healthy and I see them all look at her with some sort of pride that they helped to make this little girl better! 

Ally seems to be doing very well.  Her stomach pains have subsided and she sleeps better most nights. Her ANC and other counts have all been where Dr Broxson wants them to be.  She gets a blood draw every month to check on these.  She still has some neuropathy in her legs.  This results in ankle pain for her and she still refuses to do some things (i.e. ride her bike).   Dr B says her reflexes have not come back yet in her legs.  He thinks they should be back very soon, but if not we have to do some physical therapy to get her on the right track with that.  He says we can blame 28 months of vincristin for this.  It adds up.  Month after month she got that one.  We shall see how this one plays out.  I continue to pass by the binder we have labeled "long term side effects" for Ally.  I don't want to look into it.  I don't want to worry about the million things that could come later as a result of her treatment.  We will just deal with it if and when they occur.  After all my years of dealing with cancer, I am giving myself this gift of not worrying about it until the time comes.  Even though Jerad has declared this fact to me since the day we got married.  It took me a long time to realize that this is the way to live. 

Last but not least I want to thank my friends Lori and Jim Fultz for organizing the 3rd annual TJ Chumps Rally for Ally motorcycle poker run.  They had huge success this year recruiting riders....we had 57 bikes that rode in the event and they rose over $3000 for our Curesearch team!   We met them at the end of the ride at TJ Chumps.  I will never forget the roar of all of those bikes coming down the main road...police escorts shutting down the road.  Watching all of these riders (most of which I have never even met) riding for our girl and our cause to help other kids with cancer.  I couldn't help but end up a crying mess, but bursting with gratitude for what they had done.  There are so many good people in the world.  I see it everyday and all around me.  Thank you to all those who rode this year! THANK YOU!!

Please save the date and consider walking with us this year again in the 2nd annual Curesearch Walk to be held on Saturday September 22.  This walk was very special to us last year as it was Ally's last day of chemo.  We would like to continue to do this walk every year in her honor and for all the other warriors we have met along the way.  We are one big family!

Please continue to keep all the kids, but especially Caulin, in your prayers as he continues to navigate down his path in beating this disease too.  Some day these kids will not have to worry about cancer anymore and can get back to the business of being a kid!



Father's Day!



At the swim meet



Ally and Caulin raising money for Curesearch at garage sale!



Dunk Tank!



Fun with friends!



Bike Ride in Chicago



Fishing!



Miami Friends!



Going to Zumba for Curesearch



Rally for Ally



Paddleboat Fun

Bio - Rally for Ally

Ally is continuing to do very well.  We have been spending a lot more time at the hospital lately as she undergoes testing regarding her constant weight gain.  We met with a doctor in the Lipid Clinic and he has asked for some very thorough tests to be done.  (which I think we finally have them all complete).  They are looking at a lot of different things...her resting metabolic rate, insulin levels, hormone-type levels, etc.  With the cranial radiation that she had it can affect her pituitary gland (growth/metabolism, etc) and the large level of steroids that she had can also contribute to this problem.  We go back to the hospital on Tuesday to learn the results and come up with a plan.  I do have to say she has been working super hard to keep her weight in check with 3x a week Zumba classes and a constant monitoring of her diet.  For the most part, we think she is getting a little bit better with her belly pain (I say this but she was up a few times with it last night)...and she is also sleeping better.  Praising God that he has delivered us to this place we are in now. We just want to be a regular old family!  Of course we know that we will always be different.....check out this biography that Ally wrote for the end of year book for her class.....it was all good until I read the last paragraph....it still amazes me.....and it still will always define who Ally Barnett is.



Ally Barnett




My name is Ally. I was born October 10, 2001. I am ten years old. I was born in Ohio. My favorite food is pizza and my favorite dessert is cheesecake.


My family has five members: my mom, my dad, my sister, Carly and my brother, Evan. My sister Carly is four and my brother Evan is seven. I have two pets: my fish Trooper and my frog Swimmy.


I like to play Skylanders on the Wii with my brother and play outside with Carly. I like to do Zumba with my friend Madison Booher and our moms. It is so fun!!!! I also like to read, write, cook and swim. I am on Idle Hour swim team.


When I grow up I want to be a nurse because I have spent so much time at the hospital. When I was seven years old I was diagnosed with cancer and did two and a half years of chemotherapy treatment.


I also wanted to post the information for the 3rd Annual Rally for Ally that I mentioned in my last post.  It will be held on June 16 this year.  Here is the information on it!  We are so grateful for the support for Curesearch and for this fun event.  Thanks Lori Fultz for always continuing to make a difference. 

Rally for Ally Link

Thanks to WSU Soccer and Greeks!

I wanted to post a much delayed but huge THANK YOU to our friends at Wright State for hosting another Ally's Army event.  The soccer team again played a game at "Ally's Army Night" and the Greek organizations on campus raised funds in her honor.  This year they raised a little over $1600!!  Wow.  The most heartwarming part was when they brought the check to us.  Last year, they wrote the check over to us and we could decide which organization to send it to.  (we chose A Kid Again).  This year they brought the check over shortly after Caulin was diagnosed.  They knew how heartbroken we were about that so they wrote the check with "In honor of Caulin Booher" in the memo line.  And we talked that we would let Caulin's Crew decide which organization(s) were worthy of this money.  Such a nice tribute to raise the money on behalf of one child and then again pass along the tribute to the other.  We are really all in this together....my whole "cancer family"...and we continue to just try to do what is best for all of the kids. 

Just this weekend we went to the Basebald event at WSU.  This time it was WSU baseball.  They played a game and raised money for St Baldrick's, an organization that funds research for childhood cancer.  At the end of the game, all of the players (AND COACH) shaved their heads in support.  That's just unbelievable to me!   We also watched with much pride as Caulin threw out the first pitch just like the champ he is. 

Here are some pictures from the soccer event:

Ally and her friend Jordan

Love Rowdy's shirt "Greeks 4 Ally"

These are some of the Greeks

Basketball Head Coach Billy Donlon came to the game

Here is Ally accepting the check from the top Greek organizers

Here is Ally handing it over to Caulin!

We have seen so much support from our hometown college.  Neither Jerad nor I even went there! Always grateful to WSU.  First basketball..then soccer...now baseball...all trying to do something to make a difference and show compassion for these kids.

Ally has a long day at the hospital coming up.  She is doing some testing at the lipid clinic and then also a visit to the Hem/onc clinic for her monthly bloodwork and checkup.  She is doing a little better this month too.  She is loving her Zumba class and I really think it is helping both her joint pain, her sleeplessness, and hopefully her weight issue.  I will post more after our appointments.  Thanks for keeping Ally and all of the kids in your prayers. 

Save the Date:  The 3rd Annual TJ Chummps Rally for Ally Motorcycle Poker Run will be held June 16.  Calling all motorcycle friends for this awesome and generous event.  TJ Chummps is one of our favorite restaurants (they are very charitable) and I love seeing the wait staff wearing Rally for Ally t-shirts when we go in!

Fundraiser for three local heros

Thank God for good blood counts!  After worrying most of the month over what was probably a bad blood sample....Ally got a good report on her blood.  Her hemoglobin and platelets were back up  and her ANC was the highest I have seen it (4500).  I am always grateful to get good news..just wish I didn't have to worry for a month before it!  Ally also had a sinus infection for pretty much most of the month.  She ended up doing 10 days of antibiotics and now that is gone too!  Her brother and sister have both had a fever this past week.  I am hoping that she doesn't get it.  (If so, it will be her first fever that we don't have to rush to the hospital within an hour.)  Fevers with her still scare me so I have been going through a large amount of lysol and wipes!

We are still dealing with issues with her weight.  We watch every calorie that we can and we are pretty strict about what she eats.  I hate that my 10 year old daughter has to count calories.  We also try to exercise every day.  She has started doing Zumba classes and she really likes them.  So now we are considering this Ally's "sport" and making it a priority.  Just like any other child would go to their sport practice, we are trying our best to do this with her. (well we is actually me since Jerad really wouldn't want to do this, hah!)  She even got a few of her friends to go with her which makes it all that more fun. 

Unfortunately, all of these attempts to mitigate her weight gain have not seemed to help much.  So Dr B recommended we go to the lipid clinic at the hospital.  They can do some testing of her metabolism and hormones and see if all the chemotherapy (and more likely her radiation) has affected her.  I remember when doing the radiation at UC the docs there mentioned it could affect some of the glands (thyroid, pituitary, etc).  Maybe there is some outlying reason why she keeps gaining weight.   They will test all of these things at the clinic and hopefully be able to help us.  They shared with me that 50% of ALL survivors have a weight problem throughout their life.  But if that is all I have to worry about I will take it!  They just want to get a little more involved so as to avoid other issues (diabetes etc).  So one more area of the hospital is going to have a Barnett visit. 

We were pleased to finally get the opportunity to go the Emily's Beads of Courage Dayton Dragons game.  This is a game just for the Hemoc kids with their families and their nurses!!  We have missed this the last few years for various reasons.  I got the chance to thank Emily's mother for providing these beads for our children.  Ally has "worked" really hard to earn her beads.  She is immensely proud of them and so am I.  I truly value them as one of our most precious things. (if the house were on fire, I would grab them!)  When she wanted to take them to school to show her classmates I became very nervous.  Scared they could get lost, stolen, etc.  But they came home safe.  Here is a picture from the game of my three heros in life wearing their beads:


Kayleigh, Caulin, and Ally.....all three ALL leukemia kids from Beavercreek! 

I loved watching these kids interact at the game.  They sat and compared beads and chatted.  They truly have a kinship like no other.  Only they can understand what it is like to go through cancer treatments as a child.  They are all only about a years difference in age too.  And I believe all three will grow up to be extremely compassionate people in the world and will go on to do great things.  While their siblings were complaining of the cold night....no complaints from these three! 

And last but not least, I wanted to let you know about a couple fundraisers.  The first one is going to be at the Beavercreek Golf Club this Friday night (20th).  It is a shopping event with all proceeds going towards Curesearch for these three kids.  Ally's Army, Caulin's Crew, and Kayleigh's Crusaders.  Please consider attending if possible.  All three kids plan to be there!  (I will be at the retreat for Dayton Children's but Ally should be there!)  We are grateful for any money raised for this awesome organization.

Another event is being held at Charming Charlie's at the Greene Sunday night.  This is for a great doctor at Dayton Children's who is running for LLS woman of the year- Dr Patricia Abboud.   All the money raised goes to Leukemia and Lymphoma Society.  Man/Woman of the year is the event that Ally was the honored hero for last year (and which Dad ran for the year before that).  We are going to this event too.

Charming Charlie's (next to Von Maur) $10 admission, gets you 20% off your entire purchase!  There will be a raffle and refreshments too!  The store will open JUST FOR THE EVENT from 6pm-8pm.

Thank you Ally's Army for continuing to pray for our girl.

Girl Scout Cookie Day

Friends: I know I haven't posted for a while.  Usually this means I am just getting along with life and such and time slips past me.  Which is partially true, but I am also in a rut.  I apologize to all of the people who have sent me emails, texts, phone calls, etc.  I haven't been the best about returning them.  Right now I am just sad and mad at the world that my friends are now facing leukemia with their child.  At the hospital and amongst my "cancer family" it is a talked about that the parents face a bit of post traumatic stress disorder as soon as their child finishes treatment.  Maybe you have to go through it to realize that this can happen but I can totally see how this occurs.  Parents have to stay strong for so long...carrying the burden of their child's illness around with them for several years.  The worry alone can bear heavily on the soul and noone wants to see their child go through the pain either.  However, while going thru it, there is no choice other than to be strong.  But when it is over, I can sense that there is a bit of a collapse.  The worry escalates a bit (no more chemo safety net anymore), the child still complains (but no chemo to blame anymore) and then you look back at the enormity of what you have just been through and WOW.  Stressful.  Grateful yes, but also stressful.  So to have some of your friends (who are pretty much like my family) be diagnosed just about a month after the port came out....well it doesn't help the emotional state any.  I don't want anyone to feel sorry for us...we have so much to be grateful for...just want you to know where I am coming from and the sadness that now fills my heart.

What I can ask for, is that our army continue to support this family in their journey.  I have seen so many of you post messages to them on their caring bridge site.  Every time I see it another tear is shed by me.  We are so lucky to have our army and I know Caulin and family will love all the prayers and support.  So thank you. 

Ally seems to be doing alright. She still complains of something pretty much every day (except for vacation week...why are there no complaints during vacation week?? ;)  We never got the blood/platelets tested again.  I assumed since the doctor was okay with it that Dr Mom needed to be okay with it too.  It did shake me up quite a bit and with every symptom Ally ever speaks of I start my internal questioning, but I have left it at that.  I followed my friend Suzanne's advice...I put my faith over my fears....and we went on with our lives.  We went to an amusement park this week.  For the past few years, everytime we do something like this we end up pushing our 100+lb girl around in one of those rental stroller things.  Her ankles are too weak and she tires too easily...legs hurting, etc.  And this time we still rented the stroller, and she even still sat in the stroller, but I noticed her able to walk a little a further on her own!!  Her ankles still hurt at the end of the day, but I definitely felt like I saw progress in her.  This is a good thing and makes me very happy.  On Wednesday, she does go back to the clinic to get checked by Dr Broccoli and have her counts done.  Praying for that.  Wanting to see normal numbers again.

A while back, Ally started selling girl scout cookies.  But we took a bit of a different approach and decided to sell them in order to donate them to the Hemoc patients at Dayton Children's.  I was very proud of my girl for always wanting to give back and never forgetting her time spent there.  She did great with this and had 131 boxes donated!!  We took them to the 4th floor inpatient unit, the Almost Home unit (where she goes for spinals and such), and also had numerous boxes for the clinic.  We also shared with the PICU and the NICU.  Ally's BFF Madison had mentioned wanting to help her pass them out.  And coincidentally, Caulin was there getting chemo that day so he walked a little with us too.  So proud of these kids.



Here they are outside the Mills family lounge...getting ready to start

Going into our buddy Nevin's room.  He was a friend when Ally was inpatient a lot. 

Here they are en route to the NICU



and PICU

They stocked a lot of cabinets....

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!