One Year

It’s been a long time since I’ve update this blog.  Quite honestly, life has been busy.  But I couldn’t let today go by without posting a tribute to my dad.  Today marked one year since his passing.  September 11, a day I could never forget.  Watching my dad take his last breath is a sight that will linger in my mind forever.  As hard as the first year has been, and all the sorrow his passing brought, I am extremely grateful that he hasn’t been suffering this whole year.  What a blessing it was that his battle with leukemia was short.  In only 10 weeks his body went through so much.  When Annabelle was diagnosed with Ewing's sarcoma, I honestly prayed that if she wasn’t going to make, that if cancer was going to kill her, that Heavenly Father would take her soon and not make her have to suffer.  So I truly can appreciate that my dad didn’t have to suffer any longer than he did.

I allowed myself to grieve today and have a cry day, and now I want to focus on what a great life he lived.  So today I’d like to share something about him.  While going through some of dad’s things, my mom and I came across a letter.  When I was in Jr High my dad went back to school and attended the college of technology in Missoula.  Sometime during that, he apparently helped a lady out and she sent a thank you letter to him, addressed to the college of technology.  Coincidentally, the letter is postmarked September 11 of 1998.  My mom knew nothing about this letter, so you can imagine our feelings as we came across this and read the following:

“Dear A.J.,

                You can’t imagine how much your help meant to me last Friday evening.  Your actions and attitude poured a stream of warmth and light over my heart.

                I have repeatedly been hurt by people who call themselves Christians, (Don’t they know what that means?), until I was bitter, sarcastic and cynical of everyone who claimed that name.  Therefore your kindness redeemed the name of Christ, rekindled hope in my life (and gladness), and softened the scars on my heart.

                I hope you are blessed and rewarded in a great way and that God prospers you because you brought credit and glory to His name.  Peace be to you and your family.  Should I move to Drummond I would be honored and glad to know you.  Thank you again for your kindness.”

This letter sums up the way my dad lived his life and I am eternally grateful for his example of love and service to all people, no matter what walk of life they came from.  Thank you , dad.  I love you…forever.

April 23

     April 23^rd, the day that changed my life.  Two years ago I sat in the recovery area of Community Medical Center rocking my 4 year old daughter as she struggled with the confusion of coming out of the sedation required for the MRI.  I rocked back and forth to comfort her, but also to comfort myself as I had just been told “there’s something in there”.  It was a Saturday morning so all the other beds were empty.  Our only company was the nurses and staff taking care of Annabelle and it seemed as though all of their eyes were fixed on us.  They were probably just as shocked as I was to find out there was a tumor in that little girls neck.  I managed to not cry a single tear the entire time we were in that recovery area.  It wasn’t until I was home and my girls were in bed for the night that I allowed myself to cry.  Two years later I can still remember the details as if it were yesterday.  I know the exact route we took as they wheeled Annabelle back up to the pediatric unit.  I remember the hospitalist, Dr Lowder, looking up from the computer as we went past and saying “I’ll be in to visit in just a minute”.  I remember him and our nurse standing across the room delivering the news, a diagnosis that they were not confident in but the only thing they could tell us.  That same nurse had went back up to our room and brought me down my breakfast tray so I could eat while Annabelle was in the MRI.  It was so kind of him, but I almost vomited the little bit I did eat.

     Sitting here typing this brings back all the emotions and feelings of that day.  I am so grateful to be where we are only 2 years later, but the memories make me nervous as we leave this weekend to head to SLC for scans.  I always think that I’m fine and not worried about the scans, but inside my body is taking the brunt of the stress.  I can keep my mind busy, or asleep, but my body goes crazy.  It just wants to sleep all day, well, even more than usual!  If I didn’t have anything to do this week I wouldn’t get out of bed, but thankfully I have things that force me to get up and going.  Hopefully this will be a quick trip and we’ll be back on Tuesday, but you just never know.  I know other moms that have thought the same thing and then one single scan or one lab draw flips their world upside down…again.  All I can do is pray that never happens to us, but ultimately I am not in charge.  I just hope that what my dad said is true.  A dear friend of our family walked into his hospital room soon after he was diagnosed and said “Let me guess, you made a deal with the Lord?  You said you’d take it for Annabelle if she would never have to do it again.”  Of course dad agreed that he had indeed pled with the Lord that if there was a way that was possible that he would do that.  I’m not sure if I believe you can bargain with the Lord like that or not, but I guess for my own comfort I’d like to think that I lost my dad to cancer so now I’m safe from Annabelle having to fight again.

      And now, since I realized I haven’t update the blog since Annabelle’s biopsy, I better fill some of you in on that.  Annabelle ended up having the lump removed from her back and sent directly to PCMC for testing.  They determined that the mysterious lump was a tumor called a pilomatricoma.  You can Google it if you’d like more info, that’s what the Dr told me to do.  Seriously, I’m not joking, she really did tell me that!  Anyway, it’s not related to Ewing’s at all but it is a separate gene mutation that happens within the tissue of the tumor.  Our oncologists are talking with their genetics colleagues to determine if we should have any additional testing done when we are down next week.  Most often people have a single pilomatricoma and that’s it.  Annabelle obviously has multiple ones and that can be associated with a few different syndromes that carry additional concerns so that’s what we’re looking into right now.  The best outcome would be that Annabelle tests negative for the other syndromes and happens to be the odd one of few that gets multiple pilomatricomas for some unknown reason.  So actually getting no explanation would be the best answer.  Weird.

     We thank all of you for your continued support and prayers on Annabelle’s behalf and hope you’ll remember her as she goes in for scans on Monday.

Thoughts

     As Easter is drawing near, it brings with it a flood of memories, thoughts and emotions of the past few Easters.  2 years ago Annabelle missed the Easter egg hunt in Drummond because she was in the hospital having an MRI.  The MRI that revealed the tumor in her neck.  The MRI that changed our lives forever.  She was so heartbroken that she was missing the egg hunt festivities, but yet in too much pain to have enjoyed them anyway.  Last year we were in Utah and I took my girls to the Elwood egg hunt alone.  It was fine, but it just wasn’t home.  Unless you’ve been part of a community like Drummond, it’s hard to explain.  Needless to say, we’re excited about being home for Easter this year.  I’m hoping and praying that nothing gets in the way of Annabelle and that egg hunt!  She’s one excited girl! 

     And now to pick up where I left off last post…the bump we found on Annabelle’s hip was NOT a bite, but another mysterious lump.  Two different doctors saw it but yet we still have no answers.  They’ve been observing and measuring, as best as possible, to track their growth, or lack of, but they’re quite difficult to get an accurate reading of.  They’re just weird! There’s no other way to describe them than just plain weird.  Days after Annabelle’s last appointment for measuring the lumps, we found another.  This 4^th one is on her back.  So after lots of calls between nurses, doctors, and the oncology clinic in SLC, Annabelle has an appointment this coming Tuesday to see a dermatologist physician’s assistant in Missoula.  I was under the impression that they will be biopsying the lumps but now I’m not sure.  I spoke with the dermatologist’s nurse and she said it will depend on what they suspect them to be and how comfortable the PA is.  There is a chance that she will need to have one of the actual dermatologists do it or even a plastic surgeon, but this is a good start.  The PA was the first person that we could get into so we’ll start there.  Annabelle isn’t too worked up about the whole deal.  She jokes around about maybe having to do surgery like most kids joke about…well, I don’t know what most kids joke about, this is all I know, but she’s pretty chill about it all.

     My biggest fear about the appointment is the location.  It is across town from where most of Annabelle’s appointments are and it’s on the campus of the hospital my dad was treated at.  I haven’t been back to there since my dad left.  In fact I avoid that exit off the interstate whenever possible.  I’ve only taken it once since my dad passed and that’s because I forced myself to do it.  It would often be faster to go that way but I hate to drive past that hospital.  It’s bad enough that I can see it from the interstate and see the window of the room my dad was in last.  It’s a great facility but I’m just not ready to face it yet.  However, I now have to.  If I can hold myself together I might just stop in the little coffee/snack shop and get an Italian soda like I did so often for dad.  I miss my daddy.

     

     Besides everything going on with Annabelle’s lumps, she hasn’t been herself and had several weeks of emotional struggles as well.  I requested she have labs drawn and sure enough her thyroid hormones were out of whack again.  Stupid radiation treatment and its side effects.  Can you tell I’m mad!?!  I can’t tell where I’m at in the process of dealing with all this trauma, I think it depends on the day, but clearly I’m not over it.  I’m hoping that within the next couple of weeks Annabelle will be feeling and acting like herself again and that the thyroid issue was all it was.

     And now for a little update on sweet miss Layla.  Heavenly Father clearly knew that I was struggling and had too much other stuff to deal with so he blessed me with Layla being so sweet and so hilarious lately.  She has seriously been saying the funniest, cutest, most off the wall things.  Here’s a few examples:

“Mom, these stairs are dirty!  Grandma and Grandpa at my crib house (that’s what she calls the Yates grandparents house in Utah) have clean stairs…and they’re fluffy!  You can slide OR walk down them.”

While saying the blessing at lunch one day, “Please bless mom not to scream…”

And for my favorite…

Layla -“I love you mommy.  I love you more than Annabelle.”

Annabelle – “No, I love you more mom”

Me – “I bet you girls both love me the same, but not as much as I love you!”

Layla – “No, I love you more more more!”

Relief?

I’m not sure where the hangup was, but it took me A LONG time to hear back from the docs in SLC about what to do.  It took several calls from me and the pediatrician’s office but I finally did get through to Dr Bruggers to get an answer.  She was able to confirm that there were no stones, cysts or tumors visible on the ultrasound and with Annabelle’s labs dropping back near normal levels the plan at this point is to just wait.  If she starts having symptoms we will obviously reevaluate but for now we’re planning to repeat the ultrasound in a couple of months to check for any changes.  I’m relieved that they don’t think there is any reason for much concern at this point but it sure caused me a lot of stress last week!  I really didn't think it would bother me that much but I spent the week attached to my phone in fear of missing a return call.  We don’t get very good reception in our basement so I hated to go down there and miss a call.  Ridiculous, I know, but my fear got the best of me and the longer I had to wait the worse it got.  Being a cancer mom can sometimes turn you into a bit of a freak.  Sad, but true.

In other news with Annabelle, she’s had the cough that’s been going around and seems to linger forever.  She’s constantly trying to clear her throat and it’s driving Josh nuts.  She lays in bed at night repeatedly making “the noise” until she falls asleep and then resumes as soon as she awakes.  Bless her wonderful teacher who has to listen to it all day at school!  This cold came after 2 back to back infections and now it appears she has another which she will be seeing the Dr for tomorrow.  Also, I hate to believe it, but her lumps are getting bigger and the one above her eyebrow is now tender to the touch.  I’m hoping they will remove them soon and we won’t have to worry about them anymore.  Last night when Annabelle was bending over backwards I saw something on her hip.  When I got closer it appeared to be another “lump”.  It was somewhat red and looked more like a bug bite but feels more like her other lumps.  I put some cortisone cream on it before bed and this morning it was still there.  So I guess it’s either a bite of some sort and will soon go away, or it’s another lump and because of its location is being irritated by her clothing and turning red.

I know it sounds so extreme but we have to check everything with Annabelle just to be safe.  I am so tired of feeling like everything is so dramatic.  I just want to be done with all the drama.  It’s exhausting and frustrating.  I was talking with a friend today and saying how I just want that peace and ease of mind I had when Annabelle was in treatment.  It actually was easier then because I was being carried and comforted by so many people and prayers and now I have to be a big girl and do it on my own.  I know I’m not really alone and my Father in Heaven will not leave me that way but it’s just a different feeling for me than it was during the actual treatment process.  I look forward to the day when my mother heart can relax and not stress so much, but does that day ever really come for a mom??

My Life, A Roller Coaster

You'd think I would have learned my lesson by now and post the good results of one thing before new issues come up, but apparently I haven't.  So, I guess I'll start where I last left off and go from there...

On Sunday, January 27th we drove to Utah.  We experienced all variations of winter driving conditions on the way down.  I was glad to have Josh driving and especially grateful for all wheel drive!  When we arrived in Tremonton there was tons of snow and it was drifting over the roads and sidewalks.  Josh spent most of the week plowing and shoveling snow as his parents were gone on a cruise to the Bahamas.

Annabelle and I left on Monday and drove down to Riverton where Annabelle would be having her scans.  PCMC was booked full and couldn't get a sedated MRI scan scheduled for several more weeks so we went to Primary's outpatient satellite clinic in Riverton.  We stayed the night in a motel and enjoyed swimming in the pool and snuggling while watching TV in bed.  Tuesday morning we headed in for scans.  Annabelle did great, except she really did not want to wake up after the MRI.  We weren't in any hurry so I let her sleep for quite a while, but after being there for over 4 hours, I was ready to get going!  She was so peaceful I hated to pester her but they made me wake her.

After having labs drawn and the MRI done, we headed for x-rays.  I always look at the x-rays when they are taking them to see if anything jumps out at me.  I was relieved that when they did the ones of her skull, it looked normal and didn't appear disfigured where the lumps are.  When we finally left the clinic we grabbed some (very late) lunch and stopped at our friends, the Pender's, house.  We love the Pender family and it was just what we needed.  Annabelle perked up and played with Jackson and Hailey and then didn't want to leave.  Then we headed to a different motel up by PCMC.  The weather was bad and our appointment times were at the worst times for traffic so it was much easier and less stressful for us to just stay down in the SLC area instead of driving back and forth to Tremonton.  Of course we missed Josh and Layla, but they were having their own fun time back at the in-laws.  It was just like the good old days for Layla playing with all the toys at her "crib house".  That's what she calls grandma and grandpa's in Utah.

Wednesday morning finally came and Annabelle and I headed to PCMC.  Clinic wasn't very busy at all and it was nice to not have to wait forever and prolong the anxiety and worry!  Dr Bruggers had good news for us.  All of Annabelle's scans looked good and she was declared to still be in complete remission.  The lumps on Annabelle's head are not connected to the bone, and although Dr Bruggers did not know what they are, she felt confident that they weren't cancerous.  If they do get any bigger though, she will need to have them surgically removed and tested.  It would be a relief to have them gone and not wonder anymore, but not having to stay in Utah for the procedure was nice.  Annabelle hates to miss school and was anxious to get back!  Her white blood count was closer to normal for her and her other labs looked good, with the exception of her liver enzymes.  Dr Bruggers brought it to my attention but said that she sees it often enough, she didn't feel there was any need for concern.

We drove home on Friday the 1st of February and I have never been so relieved to be home.  Everything was supposed to be good and I thought we'd have a break from scans for the next 3 months.  Silly me.  I should know better than that.  Annabelle had a routine endocrinology check-up scheduled for Wednesday the 6th.  When we were getting ready to leave that morning, Layla was really whiny and said she didn't feel well so Josh offered to keep her home with him.  That turned about to be a very good thing!

Dr Bailey is the pediatric endocrinologist that comes to Missoula every other month.  She is managing Annabelle's thyroid care and tracking her growth, or lack of.  She was going over Annabelle labs from early January and mentioned that her liver enzymes were high and that concerned her.  I told her they were much higher last week in SLC but that Dr Bruggers wasn't worried.  Dr Bailey felt around on Annabelle's belly and thought her liver could be enlarged so she sent us for more lab work and an ultrasound that afternoon.  Annabelle was not impressed that she couldn't eat anything until after the ultrasound, but she's such a trooper!  Dr Bailey called me later that afternoon with the results.  Her labs actually looked better, which was good.  The ultrasound didn't show any issue with the liver but that her bile duct was enlarged.  What??? How strange is that!  Dr Bailey was very concerned with this and spoke with Dr Hall, our pediatrician, and was turning us over to her since Dr Bailey is only here for a week at a time.  Dr Hall called me Thursday morning and said she wasn't too worried but that she would call me later in the day after she got the official radiology report.  When she called she told me she had been researching and reading literature about this and finally called a gastrointestinal doc at PCMC in SLC.  Of course she couldn't get a response from anyone that day and Dr Hall was leaving for vacation for a week.  Just my luck!  She then called Dr Bruggers and now she is supposed to be tracking down a GI doc at PCMC to see what we do next.  They told me that I probably wouldn't hear from SLC until this next week, so the waiting game continues.

The fun just never ends around here!  I hate that it seems like so much drama all of the time, but with Annabelle's history, we have to be extra careful and look into anything that is abnormal.  The biggest fear is that her bile duct is enlarged because of something (possibly a tumor) pushing on it and backing up the flow of bile.  It could also be from some kind of obstruction, such as a gall stone that passed into the bile duct, but there wasn't anything noted from the ultrasound except that they couldn't actually see the end of the bile duct on the images.  A normal bile duct measures 2 mm in width and Annabelle's measured 6 mm.  It seems like such a small issue but obviously it could actually be a BIG issue.  Annabelle feels fine other than being extra tired lately and having had several infections in the past couple of months.  I'm anxiously awaiting the call from SLC and hoping they'll at least order some more imaging so we can know for sure if there is something we need to address or if just waiting is okay.  The not knowing is the hard part.

I promise I'll update when I know more, but until then, please continue to pray that we can get the answers that we need so that our minds can be at ease.  Thank you!

Oh, and I forgot to mention...Layla has croup again.  The poor girl just can't grow out of it!  This is the 4th time this fall/winter season and I'm so done with sleepless nights.  Ugh.

Ignorance is Bliss

Ignorance truly is bliss.  Some days I'd give just about anything to be able to go back to the days of my ignorance.  The days when I knew very little about childhood cancer.  Back when it didn't affect every single day of my life.  I know that ignorance has never changed anything, never made the world a better place, but oh how I long for those more carefree days again.  Life was a lot less complicated.  A lot less painful.

I should be packing for Utah right now, but I'm avoiding it.  I don't want to.  I don't want to go.  I really don't.  Although I'm expecting us to be back home in a week, there's no guarantee.  I feel like I did in April of 2011 as I packed up to go to Utah, not knowing how long we'd be gone.  Just the possibility of the same outcome again is scaring me.  It's usually fun to go back to Utah now.  We get to visit family and see all our friends at the hospital again.  But with reason to be concerned this time, it doesn't feel the same.  Plus our little life is so good right now, I don't want to leave it.  I don't want to leave our home.  I have projects I'm working on.  The bountiful basket that came today had lots of great produce I want to cook with.  Annabelle is loving school so much.  I'm afraid to leave my comfort zone.  I fear that we won't be back in a week to continue where we're leaving off.  I just want to curl up in the fetal position and hide in a corner and pretend this isn't happening.  I've had dreams the last few nights that I'm praying don't come to pass.  So I guess you could say they've been more like nightmares.  I wish I could ignore it all and just not go, but I can't.  I have to be the mom.  I have to be the mature one.  The strong, supportive, optimistic comforter.  Instead, Annabelle is being the strong one right now.  She can't wait to go to Utah and play with legos at the grandparents' house!  I'm so lucky to have her.  Her positive attitude is such a blessing in my life.  So I'll go put on my big girl pants and try to be the mother she deserves.

Update

I have been wanting to update the blog for a while now, but I just haven't wanted to take the time to do it.  We've had a lot of sick days around here, a lot of soul searching, thinking days for me, and I wasn't exactly sure how to express my feelings without people feeling sorry for me, or rolling their eyes, or thinking I'm a crazy depressed nut.  It seems that the last couple of months have been filled with cancer friends relapsing and several passing away.  It's just a reality of the cancer mom world I live in.  A world I'd sometimes like to forget exists.

Today my post is not what I was hoping to share, but I figured I'd better post here to get the facts out.  I'm afraid word would start to spread and rumors would fly and things might get confused or blown out of proportion.  So here it is.

A few weeks ago I noticed a "bump" on Annabelle's forehead.  It felt like a bb underneath the skin, and about that size.  I was checking on it everyday to see if it was getting smaller or bigger or changing at all and one day Annabelle said to me "Oh, so it's kind of like this one up here?" as she pointed to a different spot on her head.  I was surprised, but sure enough, just beyond her hairline there was a much larger "bump"!  You don't see it unless you part her hair and you're looking for it, but it is definitely there!  I thought maybe she bumped her head or got bitten by something and figured it would go away.  When it was still there a couple weeks later, my mom found out and begged me to call her Dr.  She saw her pediatrician on Monday, and Dr. Hall said she didn't know what it was.  She thought we should have it biopsied but wanted to call Annabelle's oncologist and see what they recommended.  Of course, Monday was a holiday, so the clinic in SLC was closed but Dr Hall told us she'd talk with Dr Bruggers on Tuesday and let us know what the plan was.  In the meantime, they drew some labs and we headed home.  On the drive home Dr Hall called with the lab results.  Annabelle's white blood count and ANC are low.  Not extremely low, but still low and lower than she normally runs.  Of course this was of concern to her.  After talking with Dr Bruggers she called me yesterday (Tuesday) and said they wanted to see her in SLC and do all of her scans while we're there.  So, we're off to Utah next week and hoping this is nothing serious.  Annabelle will have scans on Tuesday the 29th and then see Dr Bruggers on Wednesday.  The best case scenario is that the mysterious bump is identified as something benign and it either goes away on its own or is easily removed and that her blood counts return to normal on their own.  Worst case scenario is that this is a relapse or secondary cancer and we're back in fighting mode.  It's hard for me to fathom that this could be cancer again, but that's the problem, you never know how it is going to start again.  If she had a tumor bulging from her neck with extreme pain like she had before, that would be more understandable.  But cancer doesn't follow any rules and is so unpredictable.  It's just awful.  I hate cancer so much!

With all the sadness and worry, there is so much good going on in our lives right now.  We moved into a different house in November after fixing it up and we absolutely love it.  Lots of space with a basement still waiting to be finished.  I'm loving all the projects and room to decorate.  Layla is my little helper and she still melts my heart each and every day.  She's always up for a good snuggle and never runs out of kisses for me!  Annabelle is absolutely loving school.  She wishes she could sleep at the school and never come home!  I'm amazed at how much she is learning and how grown up she's getting.  Josh has been busy with work, which is always good, and enjoying hunting.  He shot a deer in rifle season and then a late season cow elk this past weekend.  He's also been out duck hunting and enjoying the great outdoors.

Please join us in praying that this turns out to be a minor scare and that Annabelle remains cancer free and can return to her happy little life as normal.  I don't think my heart could take another break.  It would just be too much.