Saturday, March 31, 2012

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....

Wednesday, March 7, 2012

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 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, 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!