1095 Days Down, 101 Days To Go

After my weariness the other day, I wanted to share some thankfulness.  I’m honestly in a thankful state 99.9% of the time  As a member of the “glass is half full” camp, I try to find the good in things because it just makes life more enjoyable.

Andy in recovery after his first chemo treatment (spinal tap of Methotrexate) on April 2, 2012.  This day also involved IV chemo in his hospital room and some oral medications as well.  It was the day Andy's cancer began to die and he was in "remission" one week later when they checked his bone marrow for evidence of disease.

Andy in recovery after his first chemo treatment (spinal tap of Methotrexate) on April 2, 2012. This day also involved IV chemo in his hospital room and some oral medications as well. It was the day Andy’s cancer began to die and he was in “remission” one week later when they checked his bone marrow for evidence of disease.

Today marks the three year anniversary of Andy’s first chemo treatment.  I’m beyond thankful for modern medicine and the gift of knowledge God has given doctors and scientists who come up with these crazy treatments.  It still amazes me that this whole protocol of 14 medicines was put together just for pediatric T-Cell leukemia patients.  Have a different kind of leukemia?  You’d get a different treatment plan.

Andy & mom wearing their cancer fighting faces after Andy's first day of chemo (April 2, 2012).

Andy & mom wearing their cancer fighting faces after Andy’s first day of chemo (April 2, 2012).

Thank you Lord for keeping Andy safe in your care.  I know you love him more than I do, which is hard for me to even conceive.  Please protect him as he finishes his last 101 days of treatment.  Help him to stay strong and encouraged even when he feels weak and defeated. Amen.

“He gives power to the weak and strength to the powerless.  Even youths will become weak and tired, and young men will fall in exhaustion.   But those who trust in the Lord will find new strength.  They will soar high on wings like eagles.  They will run and not grow weary. They will walk and not faint.” ~ Isaiah 40:29-31

Posted in Andy Updates | 5 Comments

Three Years Post Diagnosis

I started writing this journal entry some weeks ago.  Often things seem unpolished and unfit to share with the world and sometimes I just wish I had kept my own personal journal that wasn’t on public display.  Nonetheless, I decided I might as well share it today since today marks our “3 year anniversary” of knowing the giant Andy was facing.  March 31, 2012 seems so long ago, but it was the day we found out he had T-Cell Acute Lymphoblastic Leukemia.  I remember being a bit relieved that day to know there was an actual diagnosis so we could get on with his treatment.  Life has changed so much since then that it’s hard to remember life before Andy’s cancer, tho I do remember snippets.  I long to get to the point where I hardly remember life with cancer.  Where we are so far past the “cancer treatment days” that I have to reread my journal entries as a reminder.  Somehow I doubt that I will actually ever be the case tho.  These hard days seem etched into my brain and my heart.

Andy, your eyes get me every time!

Andy, your eyes get me every time!

There really hasn’t been much worthy of writing about.  Of course, to me, it’s all worthy since what goes on in my life revolves around my beautiful family, but to others, it’s just the mundane of someone else’s life.  Maybe I should be writing about it because my kids might care what when on in March 2015, unlikely, but possible.

Andy's own Lego creation - Octan Car Wash

Andy’s own Lego creation – Octan Car Wash

In all honesty, it’s really been pretty uneventful.  Andy has had three hospital chemo visits since I last wrote and all went as expected.  I pray they will always go as expected as my heart has been getting weary lately.   It’s just been a really long time and I’m getting worn out of preserving.  Treating cancer isn’t for the faint at heart.  We really are so blessed that Andy continues to thrive on his treatment plan, but I’m just keeping it real because it gets awfully tiresome at times.  I do think I finally hit the nail on the head recently.  I liken Andy’s cancer treatment to pregnancy.  Most know pregnancy is approximately 40 weeks in length and I think most women get to the “4 weeks left” mark and are just so ready to have that baby.  For me it was an awkward time with my belly sticking way out and just being exhausted carrying around the extra weight.  I was also very excited to hold that precious child of mine in my arms.  Well Andy’s cancer treatment is 40 months and 10 days to be exact.  We are right at the “4 months left” mark and I’ve had it.  I’m ready for his pill box to be off my kitchen counter and to do “real life” again.  Eat a snack past 7pm, not worry that his ANC is too low to go places and that he might get sick, go somewhere on Wednesday since we’re not waiting on his weekly Walgreens delivery for his daily heparin injections.  I’ve been reminding myself a lot lately of Psalm 118:24, it reads “This is the day the Lord has made. We will rejoice and be glad in it.”  Working to rejoice in every single day even when I feel weary.

Hattie & Andy acting a movie scene for "Will The Truck Stealer 2" (a blockbuster for sure!).

Hattie & Andy acting a movie scene for “Will The Truck Stealer 2″ (a blockbuster for sure!).

Andy’s first appointment was on January 20th and it was sedation for a spinal tap of Methotrexate.  It went well and I fully rejoiced that he only has two of those sedations left!  Praise the Lord because that is another thing that makes me weary.  I hate for him to be sedated.  Even tho he’s in good hands and he’s received the finest of care, there is still something that makes me uneasy about him being sedated.  He also got his usual IV chemo of Vincristine.  His counts were recovering nicely after his hospital stay earlier that month.  His ANC was up to 1070, his hemoglobin was up to 11.8 (normal range!), and he weighed in at 81 lbs.  His medicine stayed the same from his restart the week prior which was at the 50% dosing.  This was 5 Methotrexate tabs per week and 1 tab of 6MP for six days and ½ tab for one day each week.  He continues to take 50 mg of Prednisone per day for the first five days of each cycle.  Then his labs were checked two weeks later on February 3rd which revealed his ANC was up to 1080, so his dosing was bumped up a little more to 7 ½ tabs of Methotrexate each week and the 6MP was kept the same.

Washing some signs to hang in the freshly painted garage.

Washing some signs to hang in the freshly painted garage.

His next chemo appointment was on February 17th and this was just an office visit for IV Vincristine.  At this appointment, his ANC had skyrocketed to 4080.  It wasn’t shocking because of his reduced dose of chemo and the protocol to make sure his body has time to rebuild and not tank out right away, so the dosing is gradually increased.  Obviously his doctor saw reason to increase with his ANC rebounding so well, so she left his Methotrexate at 7 ½ tabs each week and bumped up the 6MP to 1 ½ tabs five days per week and 1 tab two days per week.  His hemoglobin was still in the “normal” range, so that was another encouragement that his bone marrow is still working well when it’s not totally suppressed with medicines.  He also continued with the 50 mg of Prednisone for the first five days of the cycle.  Otherwise it was pretty uneventful and he keeps holding steady in his weight in the low 80’s – this time he was 83 ½ lbs.  He had his labs rechecked on March 3 and his ANC was 1850 with his hemoglobin and platelets still looking wonderful, but his doctor opted to wait to increase his medicine at his next chemo appointment in March on St. Paddy’s Day.

Andy making pancakes by himself for the first time.

Andy making pancakes by himself for the first time.

If it’s not one thing it’s another with our dear Andy Boy.  The day following his blood draw he spiked a fever in the evening, so we trekked to the ER for IV antibiotics and to check his ANC. Thankfully it was still good, even tho he had a fever of nearly 104.  I knew he had the same virus as Jack had just gotten over, but it’s the protocol to get all those medicines onboard to make sure there isn’t a different underlying infection.  So thankfully we didn’t have a sleepover, even tho I packed for one.  It’s just unpredictable what those labs will say.

Celebrating mom turning the big "40" at the zoo!

Celebrating mom turning the big “40″ at the zoo!

Andy’s most recent hospital chemo appointment was on March 17th.  This too was another office quickie (tho it’s not really that quick, but much quicker than the sedated ones – about 2 hours).  Again we praised the Lord that his labs looked nice.  His ANC was 1730 and his hemoglobin and platelets continued to be in the normal range.  Both of his liver function labs looked high again, but the doctor said they were fine and to be expected.  I suppose the increase in his medicine is taxing on the liver.  He weighed in at 80 lbs on this day.  His doctor increased his Methotrexate to 10 tabs each week, but kept the 6MP at 75% which is 1 ½  tabs five days per week and 1 tab two days per week.  It will likely increase in April to get it up to 100%.  His monthly steroid pulse of Prednisone is still at 50 mg for five days.  And thankfully this month was the first month in a long time that he didn’t have any side effects coming off it.  In January he had a backache that lasted two days and then in February he had a migraine.  I know they are an essential part of his treatment, but it’s just difficult to give him a medicine that I know will bring him agony when comes off of it.  Only four more treatments tho, we can do it!

Snoozing with Floyd the cat - he is the cat whisper around here.

Snoozing with Floyd the cat – he is the cat whisper around here.

Thank you for praying for Andy when he comes to your mind.  I often feel like we’re forgotten about, but know we have faithful prayer warriors and we are so thankful for them.  I know he’s been sick a long time, believe me it feels like we’ve been at this for an eternity.  Thankfully he looks like your typical 10 year old boy, but since there is no outward reminder that he is still in this battle, people genuinely forget and seem surprised that he’s still in treatment.  It’s a long road, but one I pray is worthy of walking.  I trust God has brought us through this so that he can get the glory for what Andy and our family have gone through.  He will never leave or forsake us and I need to stand on that promise.

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” ~ Galatians 6:9

Posted in Andy Updates | 13 Comments

Four Months Left

I just had to share.  It brings me great joy even tho I haven’t been completely filled with joy lately.  This cancer fighting gig isn’t for sissies and it often still wears my out emotionally, but that is another story for another day.  For now, I‘m reveling in the JOY that four months from today, Andy will take his last chemo medicine!

Enjoying a sunny winter day at the zoo!

Enjoying a sunny winter day at the zoo!

“Those who plant in tears will harvest with shouts of joy.” ~ Psalm 126:5

Posted in Andy Updates | 11 Comments

Six months left plus a hospital stay

Just when you think life is on “easy street”, a swift reminder comes that you’re not.  Today’s entry was going to be a quick, “yay, six months from today is last chemo day,” but atlas I have more to write.

Andy transferring from ER to his room.

Andy transferring from ER to his room.

Last Tuesday after visiting a friend in the hospital with her little six month old, I arrived home only to turn around an hour later taking Andy to the ER with a fever.  Seriously, couldn’t this have been better coordinated?  I know gas is only a bit over $2/gallon now which is much nicer than the over $4/gallon is was when we were driving back and forth daily, but still!  We quickly got out of our jammies, packed our bags, and headed South, praying that it didn’t mean an overnighter.  In the ER we found his hemoglobin had dropped to 5, which is extremely low, and his ANC was zero.  He was given IV antibiotics and we were sent up to our beloved 4th floor for the duration of our stay.

Starting to feel a little better and "pink up" a bit thanks to the blood.

Starting to feel a little better and “pink up” a bit thanks to the blood.

The next morning (Wednesday), when the on-call oncologist visited him, she was concerned his ANC was still zero and started talking about having a bone marrow biopsy if it didn’t come up “soon”.  Not sure what soon was or why she was even talking about this already because his labs had only been run twelve hours prior and we gave him his medicine before we knew he had a fever.  It was his big night of the week too with 10 methotrexate tabs and 2.5 6MP tabs.  None the less,  the words bone marrow biopsy set my heart into a panic.  I don’t even want to think about things going sour with his treatment at this point.  I just can’t go there, but honestly my mind did.  We’re so close to the end and to think all this junk was for naught.  He was in good spirits, but continued to have fevers on and off during the day and, what was even more concerning was, he had no symptoms of anything underlying (i.e. no cough, cold, etc.).

BINGO!  Andy played hospital BINGO and won twice!

BINGO! Andy played hospital BINGO and won twice!

Thankfully the next morning (Thursday), his ANC was up to 50 when they checked his blood.  Fifty – that is something and I was happy to see his bone marrow was doing something and trying to churn out white cells.  His hemoglobin was up as well, but that was pretty artificial since he had a double transfusion the day before.  Platelets were up slightly too, so that was all encouraging and the doctor was happy enough with it.  His fevers subsided by afternoon too, which was comforting.

Calling in his BINGO to confirm he won.

Calling in his BINGO to confirm he won.

By Friday he was on the up and up.  His regular oncologist was on the floor now doing the on-call rotation and said he thought Andy was good to go home.  All his labs were trending up and now his ANC was 190.  Sure enough tho, that night Andy got another fever at home.  After a call to the doctor, he wanted him to have some Tylenol and for us to check on him at 2am to see if he had a fever again.  He was great at 2 am and in the morning as well.

One of his prizes - a huge USA puzzle.  He also picked out a metal Tonka bulldozer for his other prize.

One of his prizes – a huge USA puzzle. He also picked out a metal Tonka bulldozer for his other prize.

With his temp down Saturday, we thought maybe we’d finally gotten over the hurdle.  We had an impromptu birthday party for our friends who are in the hospital with their baby.  Their oldest son was turning six, so we joined them for a little party complete with a parade of decorated wagons around the hospital, dinner, and ice cream.  Unfortunately right before we were leaving, Andy felt warm.  I called our poor doctor again and since Andy was on the 4th floor for the party, he had us skip the ER and just go on the floor to have his labs drawn and more IV antibiotics.  It took a few hours to get it all done, but thankfully we were able to go home.  His ANC was up to 770 and his platelets and hemoglobin were also up a bit more too.  All in all, great news, but still we want this dang fever to go away and stay away.

When boredom sets in, daddy has fun with the Etch-A-Sketch. :)

When boredom sets in, daddy has fun with the Etch-A-Sketch. :)

Yesterday (Sunday), we skipped church in an effort to recover from our crazy week, but mostly to make sure Andy (or anyone else) didn’t get sick.  We can’t afford for any of us to get sick, but especially not him.  We need him to really have a good chance to recover and build back up before they restart his chemo.  The original plan was to wait until his appointment on the 20th, however with his ANC already above the 750 threshold, his doctor said they’d be in touch as to possibly restarting his at-home meds later in the week.  He did have another low-grade fever last night, but it didn’t meet the requirements of calling in, thankfully.

Saturday night after the party waiting for his antibiotics infusion to finish.

Saturday night after the party waiting for his antibiotics infusion to finish.

Today he’s been “normal” all day, so we’re thankful for that.  He has a spot on his arm that is suspect of something.  Googling pictures it looks like it could be ringworm (where in the world did that come from??).  I’m treating it as such and keeping it covered.  It’s a little smaller than a dime.  It was about a pencil eraser in diameter in the hospital, but both nurses that looked at it didn’t know what to make of it and we never thought to show the doctor.  I told him about it yesterday during our phone consult and he wasn’t worried about it and said use OTC antifungal.  Thankfully it’s not bigger today and Dr. Google did say that could cause a fever, tho his doctor said he didn’t think so.  I’m honestly grasping at anything here.  I just want to be done with this.  My heart is so weary sometimes.  We’ve come so far and I don’t want to go back.  Doing my best to trust God and know He knows the future.

We deeply appreciate your prayers for Andy to get well and to stay well.  We want him to finish out his last six months strongly and to have no hiccups along the way.  We are already planning his “last day of chemo” party for July 12 and we want it to be a huge celebration of all that he has overcome and always (well almost) with a smile on his face.  We know God has this, but your prayers for him are comfort to our family.  Continuing to pray it’s the Lord’s will to cure Andy of his cancer and for the Lord to get all the glory for it.  Clinging to this verse today…

“Give all your worries and cares to God, for he cares about you.” ~ 1 Peter 5:7

Posted in Andy Updates | 15 Comments

Happy New Year!

Squeeee, it’s 2015!  You know what the means right?  Andy finishes chemo THIS YEAR!!!  While I should resolve to write on Andy’s blog more often, I don’t do New Year’s resolutions.  I find them silly and a great way to set one’s self up for failure.  While updates have been few and far between lately, our life has honestly been pretty “normal”.  I rather like it that way and figure not many people are too interested in our day-to-day life.  I suppose if I made entries more often, then each time wouldn’t be the length of a novel.  Maybe I’ll work on that.  Since I last wrote, Andy’s had three appointments.  All were uneventful and we’re thankful to be that much closer to the end.

Lookie, braces are off!

Off came the braces on October 14th and Andy couldn’t be happier!  Fingers crossed the rest come in straight.

His appointment on October 28, was another spinal tap of Methotrexate  – only three more of those left now!  He did wonderful as usual, but it still doesn’t change the fact that is makes mom and dad a little uneasy that he is sedated.  Thankfully he has an excellent care team and he seems to tolerate the procedure well.  His labs looked good at this appointment with his ANC being 770 and his weight 81 lbs.  His hemoglobin was a little low at 8.9 – normal is 11-14, but nothing they didn’t expect his body to be able to recover on its own.  Besides the spinal tap, he also got the usual Vincristine in his port.

A gorgeous fall day at the pumpkin patch.

A gorgeous fall day at the pumpkin patch.

His second appointment was on November 25.  This one was a quicker appointment since he just got the Vincristine in his port.  Again, his labs looked pretty good with his ANC being 1390 and his weight at 83 lbs.  Unfortunately his hemoglobin had dropped a bit more to 8.4, so we were on the cusp on him possibly needing some blood if his body didn’t recover on his own.  The doctors typically transfusion between 7 – 8 and told us just to be mindful of signs he was needing blood.  Things like pale lips and gum, rapid heart rate, dizziness, headaches, sleepiness, etc.

Love those boys!

Love those boys!

On the evening of Saturday, December 5, we knew it was time to take Andy to the hospital for some blood.  He’d been very sleepy, just overall lacked energy, and was looking a bit pale, especially his gums.  We phoned the on-call oncologist and she said she trusted our judgment and if we thought he needed to come in, she’d call the ER to let them know we were coming.  It’s a perk of being an oncology kid – you have a “fast pass” in the ER (well at least to get you a bed, beyond that it can be painfully slow unless you have a fever).  After being there nearly two hours, we finally got the news that his hemoglobin was 6.6 – extremely low and he would need a transfusion.  Since it was already nearly 10pm, the oncologist just wanted him to stay the night and she would check him in the morning.  Also worth noting, he had thrown up a few times that night.  The ER doctor said it could be from the low hemoglobin and honestly I wasn’t too worried because he can randomly throw up and I always just chalk it up to part of the chemo.  Thankfully it’s not too often we have to deal with barfies anymore.

A little pumpkin carving action.

A little pumpkin carving action.

Once we got settled into his room on the 4th floor, the very same room we spent 10 nights in at the beginning of treatment, the blood arrived.  However upon taking his vitals before starting the blood, he was running a fever.  Halt the blood, first a blood culture must be drawn and IV antibiotics given.  Finally about 2am, the blood was started, which had to run over four hours because he was so anemic.  We were hopeful of getting out in the morning since that was what we were told, but Andy continued to have a fever all day and had some other potty problems, so the doctor wanted to keep us until they could give him another dose of IV antibiotics at 6pm.  His ANC was 1070 when they checked it in the ER the night before, but 12 hours later, it was down to 760 (clearly fighting a bug) and his hemoglobin was only up to 7.3, so the doctor ordered another unit of blood for him.  He slept most of the day away and true to her word, the oncologist let us go home that night after the antibiotics.

Starting to pink up a little bit.  Poor sweetie pie.

Starting to pink up a little bit. Poor sweetie pie.

The three of us were all so ready to go home.  What we thought would be a few hours stay, turned out to be nearly 30 hours.  We had a sweet, new nurse for night shift both nights.  Unfortunately when she went to deaccess his port so we could go home, she forgot to put the heparin in it so it wouldn’t clot off.  She came running after us as she didn’t realize this until we were actually getting on the elevator to go to the parking garage.  She was so apologetic about it and we felt bad for her.  Well this oversight took nearly two hours to remedy because she had trouble reaccessing him, had to call the IV team to come reaccess him (two extra pokes for poor Andy) and by the time the port was accessed properly, it was already clotted off.  So the nurse had to order some declotting medicine from the pharmacy, which must sit 30 minutes.  Thankfully one dose did the trick and at nearly 11pm we pulled away from the parking garage to head home.

So thankful for this donor and the blood they gave to help my son.

So thankful for this donor and the blood they gave to help my son.

The story really should end that we all had a wonderful night sleep at home and while we did, things took a turn for the worse as every single member of our household got Andy’s stomach bug.  Thank-you-very-much-Andy!  So while he did have terribly low hemoglobin and needed a double transfusion, he also was battling a tummy bug that he decided to share with the rest of us.  I’ll be honest, it was pretty brutal, however it was short lived and for that I’m thankful.  It’s a good reminder to douse ourselves in hand sanitizer when we’re out and about, especially this time of year when the crowds are thick and germs are at their peek, and continue good soap-and-water hand washing at home.

Thanks for the sign Mike!

Thanks for the sign Brenda & Mike!

Andy’s latest hospital visits was December 23.  It was to be a quick pit-stop visit with just labs and Vincristine in his port, however the afternoon before, December 22, he decided to run another fever.  Of course it was too close to the clinic closing, so off to the ER it was again.  This time we packed our bags because we didn’t do that last time and poor daddy had to run home at 10pm to get all our things for overnight.  Thankfully this time the visit was quick.  A fever does that for you because they have to be administering IV antibiotics within 30 minutes of arrival.  And the stars aligned because his ANC was high enough that he needn’t be admitted!  It was 1060, however his hemoglobin was still a bit low at 8.2 and his platelets were down to 50 (normal is 140-440).  On the bright side, Clem the Clown gave us a personal magic show in Andy’s ER room.

No tears here, just lots of laughs with Clem the Clown.

No tears here, just lots of laughs with Clem the Clown.

So the next morning, it’s “hi ho, hi ho, off to Randall we go” for chemo.  Thankfully the fever had subsided by the time of his appointment and it was a pretty quick and uneventful visit.  Since his labs had just been done about 18 hours before, things were still basically the same, tho his hemoglobin came up a smidge to 8.7 and his platelets to 61 – ANC was still at 1060 and he weighed 82 lbs.  Because his doctor wanted to be proactive and not have us have to return to the ER that night for more IV antibiotics, he suggested we might give him another dose even tho he wasn’t running a fever.  As much as we don’t really relish giving him any unnecessary medicine, we really didn’t want to have to come back that night if he decided to spike another fever, so we opted for the medicine.  That night we were thanking our lucky stars because the fever returned.  Thankfully it passed by morning and we didn’t have any future ER or clinic visits.  However, Andy did get another tummy bug right after Christmas that was pretty rotten and was suspect of being c. diff, but before we could take a “sample” to the lab on Monday, he got better and seems to finally be himself after a pretty iffy month of feeling in the toilet a lot of the time.  He’s taken lots of naps as of late, but apparently he’s just been fighting off little sickies; tis the season!  He’s finally been eating better over the past few days too and hasn’t had a nap in several days.  I think we’re turning a corner.

Andy with Clem the Clown in the ER

Andy with Clem the Clown in the ER

And just so I don’t forget, he’s continuing on the same medicine dosing as he has been since summer with 25 mg of Prednisone twice daily for the first five days of each cycle, then he takes 2 ½ tabs four days per week and 2 tabs three days per week of 6MP, 10 tabs of Methotrexate on Tuesdays, and then his Septra antibiotic twice daily each Friday, Saturday, and Sunday.  He’s still taking 125% of the ideal dosing, but that is just what his body tolerates best to keep him in the window of 750-1500 ANC.

Are those Christmas jammies?  Why yes, they're Christmas jammies!

Are those Christmas jammies? Why yes, they’re Christmas jammies!

We had a lovely Christmas celebration, very low-key with family. Andy wasn’t feeling tops that day, so he napped off and on at Auntie’s house while the rest of us played a game of charades and visited.

Thanks Uncle Mike & Aunt Kelly!

Thanks Uncle Mike & Aunt Kelly!

Only seven more hospital chemo appointments left; we can almost count down on one hand! Recently I’ve had a few different people seem surprised we’re “still doing this”, but kindly reminded them that blood cancer is something that is a very lengthy process.  There is no solid tumor to attack and remove. It’s cancer throughout the entire body since blood is everywhere.

Andy and his signs. :)

Andy loves his signs. :-)

We always appreciate prayers for Andy when he comes to your mind.  We’re hopeful that we had our last overnighter at the hospital.  Even tho it’s been two years since we had to stay overnight, it was an unwelcome reminder of how unpleasant it is.  There is truly no place like home.  So excited to usher in 2015 and get the last of Andy’s chemo treatments behind us.

“The Lord is my shepherd, I shall not want.” ~ Psalm 23:1

Posted in Andy Updates | 9 Comments

Ride For A Child

I know I’m long overdue for an Andy update.  It’s coming next week after his appointment on Tuesday.  For now tho, I wanted to share about something I’ve that has been a long time in the making.  It’s been a difficult post for me to write because it still touches a little bit of an emotional chord for me, so I have just put it off.  It has been culminating since March and I have wanted to write about it numerous times, but it never seemed the right time.  I already know this entry will be long, but I really don’t want to forget the details.

It's today!

It’s today!

Back in March, we received a letter in the mail from the local childhood cancer support group, the Candlelighters, asking if our Andy could be part of their “Ride for a Child” fundraiser for 2014.  Tears flowed as I read the letter to Chuck.  It was such an honor that out of the vast amount of children that have been touched by cancer, they picked our Andy to be one of the faces of their campaign.

Andy and his "team"

Andy and his “team”

“Ride for a Child” is an annual fundraiser that brings in most of the money to help support the Candlelighters organization.  This organization is very near and dear to our hearts.  They were the first contact we had outside of the oncologist when Andy hadn’t even been officially diagnosed.  On our first visit to the oncology office, they were hosting a patient lunch that day and we were able to talk with a volunteer about childhood cancer.  Something we were praying wouldn’t be, but in our hearts knew was.  This loving lady reached out to us and comforted us in a time of confusion and worry.  Her presence and genuine care really helped to set my heart at ease even tho there were so many unknowns that were on the road ahead.

Check out those riding shirts - all with "ANDY" on the back!

Check out those riding shirts – all with “ANDY” on the back!

Candlelighters have helped carry us along this journey.  One way we’ve been touched is through family activities.  The organization strongly believes that cancer affects the entire family, so everything is very family centered.  A favorite activity is the annual Christmas party, but there are many opportunities for families to unite all throughout the year.  There are even two different summer camps, tho we haven’t attended yet.

The big ride-out when all the kids and the cyclists when for a ride.

Getting ready for a bike ride!

Besides family fun, they also bring meals to both local hospitals twice a month.  These meals are such a blessing to the families who are either staying in-patient or are just in the clinic for the day.  One less thing to have to worry about and truly, one less expense.  They also offer financial support to those families that need that too.

Andy checking out the porta-potty! :)

Andy checking out the “blue rooms”! :)

While tangible things can often be of help, the network of emotional support the Candlelighters provide is tremendous.  As much as people say they understand what you’re going through, honestly, unless you’ve walked through it, you really can’t fully comprehend the magnitude of it all.  It’s been refreshing and encouraging to see families who are on the other side; children all finished with treatment.  Of course, we’ve also met families who have lost their precious children to this hideous disease and that is always very difficult for us to digest.

A group photo with mom & dad.

A group photo with mom & dad.

“The Ride for a Child” campaign is a huge undertaking.  Each year a huge team of bicyclist join together to raise money for the Candlelighters.  This year there were seven children who were the face of this campaign.  Seven precious lives that have been touched by cancer.  Some families we knew already and others we got to know.  All the children were actually done with treatment except for Andy and one other child (she just finished up her treatment last month).  It was so encouraging to see these dear children overcoming such a horrific illness.

Jack & Andy waiting at the Harvest of Hope dinner.

Jack & Andy waiting at the Harvest of Hope dinner.

Andy’s team was nothing short of amazing!  There were nine cyclists that rode in honor of him.  Nine new friends we have made who gave up an entire week to ride nearly 500 miles and to elevations that reached 35,000 ft.  It was “7 peaks in 7 days” and it sounds pretty brutal if you ask me!  Besides the time spent cycling for the week, there were countless hours spent training for the ride and fundraising.  And the part that blows me away is that they were doing this for children they had never even met.  It brings me to tears thinking about their selflessness.

Family Photo

Family Photo

We first met Andy’s team in June at a pizza party to kick off the event.  At this event we were able to meet five members of his team.  Three of the missing members lived too far to travel to the party (one in Minnesota and two in Canada).  That was another thing that totally blew me away, people traveling so far to bicycle and raise money in the name of childhood cancer.

Andy next to the trophies each of the children received.  The are too cute and they are solar powered!

Andy next to the trophies each of the children received. The are too cute and they are even solar powered!

Over the course of the summer, Andy received 30 postcards in the mail from the riders.  All notes of encouragement to him and the fact that when things were tough for them, they focused on Andy and how tough he was.  They sent postcards during the ride telling him what they had seen that day and how far they traveled.  The icing on the cake was that we traveled to Madras, Oregon, in September to meet the entire team on a short ride day and got to eat dinner and hang out with them for the evening.  What wonderful memories and being able to share his story more in depth with the riders we hadn’t had the opportunity to meet yet.  Candlelighters even put each family up in a hotel room and got the kids their own mini riding jersey just like the ones the riders wore – they were too darling!

Dessert auction time - looks yummy!

Dessert auction time – looks yummy!

To wrap up the event, we were invited to the Harvest of Hope.  This is a fancy dinner event with both a live and silent auction.  We were even reunited with several of the riders from Andy’s team.  The evening was nothing short of amazing!  All the children got to help auction off desserts in the live auction – pretty tempting not to want to stick a finger in for a taste!  This event alone raised $118,000 toward the Candlelighters coming year’s needs and activities.

Dinner - yum!

Dinner – yum!

It was a great honor for Andy to be asked to be part of this amazing fundraiser.  Many sweet memories were made and we have nine new friends.  We are so grateful to the Candlelighters for this special opportunity for Andy’s story to be shared.

All the RFAC children from 2014

All the RFAC children from 2014

“From his abundance we have all received one gracious blessing after another.” ~ John 1:16

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What’s in a name?

When we picked out names for our children, I never really gave much thought to what each name meant.  Chuck and I picked out names we liked and that was that.  Each child has a bit of family heritage in their name, but I didn’t learn until after the fact, that we should be mindful when choosing a name because they might actually live up to what it means.  Not mentioning any names here. ;-)

It's always fun getting a ride from dad!

It’s always fun getting a ride from dad!

While I know what all their names mean since I included that in each child’s baby book, I hadn’t really given much thought to what any of them meant for quite some time.  However, at our first Friday school co-op meeting of the school year, all that changed when I was reminded during a Chapel lesson what the name Andrew means.  As our co-op coordinator was sharing what different names mean, she shared that Andrew means “strong, manly, brave”.  Then she looked at Andy and said to him that he sure has lived up to the meaning of his name.  It was at that moment that I realized how his name really does fit him.  Before he was even conceived, I knew we’d name him Andrew if we were blessed with another son.  I love that his name fits him so well, tho I wish that the brave part was because he scales to the top of trees while he’s outside playing or that he’s a little dare devil when he’s riding his bike.  And while he is brave to do many things, he’s also forced to be brave while fighting for his precious life.

With the engineer of the Chehalis Train.

With the engineer of the Chehalis Train.

Summer has gone by in a snap.  We had many fun times, but honestly not as many as I had hoped for.  Yes, we camped, but not nearly enough.  Yes, we went to the beach to play in the sand, but not nearly enough.  Yes, we ate ice cream and roasted smores, but here again, it wasn’t nearly enough.  I adore summer.  Summer equals long, carefree days with nothing too pressing on your plate.  I am coming to sense that I just need the “life season” of summer to stay and maybe that is why I’m trying so hard to cling to summer.  With all that we’ve gone through with Andy, I want to hang onto that summer feeling through the whole year.  I have no reason to think we’re not through the worst of things, but I still yearn for summer to stay.

Oh how the boys love trains!

Oh how the boys love trains!

While most everything about summer was wonderful, one part was not.  On August 25, we lost our beloved dog of 12 years, Pepper.  She had been on the downhill for quite some time, but how she died wasn’t how I really anticipated it to happen.  The Lord is so good because of how he orchestrated her death.  I know He knew we couldn’t handle it any other way.  While she had been declining in her health and having trouble in many aspects, she really seemed happy still, so we had no reason to think that she was actually going to just die.  It was really a “here today, gone tomorrow” type of death.  She had wanted out in the middle of the night (typical for her) and the next morning we found her dead under the front porch, her very favorite place outside.  While it was very difficult for the kids to see their beloved Pepper dead, it was also a relief that she died at home and we didn’t have to make the decision of when to have her put to sleep.  We were so blessed to be able to bury her in our backyard where the kids can go visit her gravesite whenever they want to.  She loved her home and I know it is most healing for our family to be able to keep her here.  Losing a pet is so hard and we still miss her so very much.

Andy with Pepper on his birthday.  Hard to tell from the picture, but she was very ill that day. :(

Andy with Pepper on his birthday. Hard to tell from the picture, but she was very ill that day. :(

Andy’s had three appointments since I last updated.  They were all very uneventful and we’re so thankful he continues to respond so well to his treatment.

Visiting a fun toy store in Bend, Oregon.

Visiting a fun toy store in Bend, Oregon.

His first appointment was on August 5.  That day he had a spinal tap with Methotrexate and a push of Vincristine in his port.  He weighed in at 82 lbs and had an ANC of 1310.  His doctor was very pleased with all his labs and how he’s tracking with his progress.

Crater Lake National Park

Crater Lake National Park

His second appointment was on September 2 where he had a push of Vincristine in his port and his typical labs ran.  Again, all looked perfect and it was pretty short and sweet.  He weighed 83.5 lbs and had an ANC of 1230.

Andy and his oncologist with his new Dum Dums beach towel thanks to all the wrappers he saved up.

Andy and his oncologist with his new Dum Dums beach towel thanks to all the wrappers he saved.

His most recent appointment was on September 30.  This was another appointment with just Vincristine in his port and labs.  His ANC was down to 820 this time, but still well within normal for him on treatment and he weighed 83 lbs.

Oh how I love those sweet little hands.

Oh how I love those sweet little hands.

All his medicines have remained the same these past three appointments.  Just because I like to keep track of it, his steroid pulse is 50 mg/day of Prednisone, he then takes 10 tabs of Methotrexate each Tuesday, 2.5 tabs of 6MP four days per week and 2 tabs the other three days per week, and his Septra antibiotic twice daily for three days each week.

May you always feel small when you stand beside the ocean.

May you always feel small when you are beside the ocean.

We continue to be so very thankful to our gracious God who is walking with our family through this valley.  We’re so blessed to be seeing the light at the end of the tunnel off in the distance and pray for smooth and easy days ahead.  As always, we covet your prayers for Andy’s protection from long-term side effects from his medicines and also for complete healing of his precious body.

“The Lord directs our steps, so why try to understand everything along the way?” ~ Proverbs 20:24

 

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Who has only one year of chemo left???

This guy!!!

A little fun on the lake!

A little fun on the lake!

Today marks one year left of treatment.  So excited for July 12, 2015 – let the countdown begin!  I think this calls for a big long chain strung through the house so we can rip off each link and watch the days get closer and closer.

A day out with trains in Bend, Oregon.

A day out with trains in Bend, Oregon.

This will just be a quickie update because we’re all too busy enjoying summer for the mama to sit around the computer and type.  Andy had his most recent oncology visit this past Tuesday, July 8th, and all looked perfect.  His appointment was with the new oncologist and we loved him.  All his labs looked wonderful and his ANC was right on track at 910.  It was a nice pitstop appointment.  He’s even packing on those pounds and is now up to 83.3!  He goes on the 23rd of July for a follow-up MRI on his hip and will hopefully be released from his crutches that afternoon.  He’s a toughie and we’re so proud of how he just takes everything in stride.

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Our two digit miget!

Lastly, thank you for all the birthday wishes for Andy.  He had a wonderful day surrounded by family and friends who love him dearly.

“But blessed are those who trust in the Lord and have made the Lord their hope and confidence.” ~ Jeremiah 17:7

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Happy 10th Birthday Andy

How can my *baby* be turning double digits today?  It’s pure craziness if you ask me, yet I’m so thankful that he’s turning another year older.  Another birthday as a cancer survivor, all praise to the Lord!

Today he’s celebrating by going out to lunch with his grandparents at Popeye’s Chicken and then he’ll hobble around on his “sympathy sticks” (aka crutches) to a few toy stores in search of his perfect gift from Grammie & Papa.  While he’s away shopping, I’m going to create birthday magic at home to get ready for tonight’s party.

Here’s to 10 wonderful years Andy, and many, many more to come. We love you sweet boy!

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OLYMPUS DIGITAL CAMERA

“For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.” ~ Ephesians 2:10

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Another hiccup

So back at the end of May, we had a fun play date at the park with some dear friends.  Well some child with weakened bones got the bright idea to jump off the swing while it was still in motion.  Usually that isn’t a big deal to me.  Kids are kids and especially boys are boys; life is full of rough and tumble and I’m really okay with that.  At first I didn’t know he actually jumped off the swing, so when he suddenly he started limping over the weekend it was a little alarming to me thinking he might have some underlying bone problem from his chemo.  Bone problems are a very real thing with long term steroids use.  The issue is called avascular necrosis (AVN for short) and basically the bone is starved of blood and dies.  You can ultimately have bones collapsing and it’s really not good.  Thankfully mid week it occurred to me we had visited the park recently, so I asked him if he did anything crazy that I wasn’t aware of.  It was cute and like a “light bulb” moment for him – he shared that he did actually jump off the swing and landed funny giving lots of impact to that leg and almost falling, but he was proud he caught himself and didn’t actually fall down.  You know, you wouldn’t want to jump off a swing and fall on your bum at nine – that’s pretty embarrassing.  I figured his daredevil stunt just pulled a muscle and it would get better.

After reading a biography about Milton Hershey, Andy made his own giant Hershey bar!

After reading a biography about Milton Hershey, Andy made his own giant Hershey bar!

Finally after a week of it hurting, we went to the oncologist for a once over and to get an x-ray.  He had been limping around really good and complaining that it really hurt to walk on it.  The x-ray didn’t show anything and so his oncologist too figured it was a pulled muscle.  He wanted Andy to rest and ice it over the weekend and said if it wasn’t better by Tuesday at his regular chemo appointment, that he’d probably schedule a MRI to further evaluate.  Monday came and he was definitely not any better, so I called to see about scheduling the MRI for Tuesday so we didn’t have to drive to Portland twice during the week.  Thankfully they had a noon opening for the MRI on Tuesday – such an answer to prayer.

Strike a pose - sometimes it takes  strange positioning to get blood return on his port.  This time it didn't work and he had to get it unclotted with some TPA.

Strike a pose – sometimes it takes strange positioning to get blood return on his port. This time it didn’t work and he had to get it unclotted with some TPA.

By the time we had his appointment with the oncologist on Tuesday afternoon, the results were in that he had a stress fracture in his right hip.  Oh joy!  They got him some crutches and was told to use them for the next three week and once he could walk without limping he was good to go.  During the drive home, however, the plan of action changed course and there was a message that the orthopedist wanted to see him the next day for further evaluation.  I called to confirm that this was necessary and Andy’s nurse said yes, that they had viewed his MRI and were considering casting it and/or a wheelchair.  This was not the news I wanted to hear, but kept it from Andy because I didn’t want to get him worked up for nothing.  I can’t imagine that challenge of having a full leg and hip cast – oh the horror of just trying to go to the bathroom, let along get around, bathe, etc.

Nice crutches! :(

Nice crutches! :(

So it was back to Portland we went yesterday.  If you’re counting, that is three trips in less than a week, but it I didn’t actually share the fact that daddy took the boys down Saturday for something they’ve had planned for a while and then Sunday we had another engagement in Portland that was important to go to as well.  So actually that is five trips in six days – yikes!  Thankfully the appointment with the orthopedist went very well and after examining him, she concluded that since he wasn’t in any pain while using the crutches and was doing such a good job following directions and staying off it, she thought a cast was overkill.  Her office really wanted to make sure that he would cooperate and make sure not to bear weight on it, so it would heal and to avoid a full break.  A full break would require a surgery to fasten the bones back together, which I can only imagine would be a terrible thing to have to endure.  Her recommendation is crutches for at least six weeks and to follow up with her then and see how the fracture is healing.  She said x-ray, but since the x-ray didn’t show, I’m wondering if he’ll actually have to have a repeat MRI.

Stopping at Toys R Us was a little consolation prize for all the junk he had endured over the past week.

Stopping at Toys R Us was a little consolation prize for all the junk he had endured over the past week.

I’m so thankful Andy is handling this so well.  He’s a bit annoyed with the crutches, but is honestly being so cheerful about it.  Chuck and I have both braced ourselves and the other kids that since he’s on steroids through Saturday, it might be a bit ugly this week.  Our mantra of nothing new on steroid week isn’t working out very well right now.  I think the Lord is giving him a lot of grace right now and I’m thankful for his cheerfulness toward this situation.  We’re thankful it’s not worse and that we did have the MRI when we did to prevent further injury to the area.  We were also very thankful to see that overall his bones look wonderful and show no signs of AVN.  Both his hip ball and socket joints look beautiful, which is a very typical spot for AVN to develop.  It was also encouraging that the orthopedist didn’t think his bone loss was horrible.  She said yes his bones are more weakened and brittle than they should be, but we know that will happen with the medicines he’s on.  She said to continue supplementing the calcium and vitamin D each day and rest assured that they will strength once his therapy is over.  She also assured us that the bone will have no problem remodeling itself from this injury while on the chemo medicines, but it could take a little longer than usual because of the weakened state.  Overall, we were comforted by her outlook on the situation and the fact that she was very reassuring that once cancer treatment is finished, he’ll be good as new.

Playing in the dirt - there is nothing better to Andy!

Playing in the dirt – there is nothing better to Andy!

On the chemo front, all went well.  It seems like either chemo or another issue (fever, hip fracture, etc.) takes center stage at the appointment, so chemo was just kind of in the background this time.  He weigh 80.2 lbs. which was awesome and is 4’9.5” tall!  His ANC was a touch high this time at 1550, but there was no concern with it at this point.  Since he gained a little more weight, his 6MP dose went up 1/2 tab/week, so now he’s taking 24 mg prednisone twice a day for five days at the beginning of the cycle, 2 tabs of 6MP 3 days/week, 2.5 tabs of 6MP 4 days/week, 9.5 tabs of methotrexate once per week, and his usual Septra dose of 2 tabs/day three days/week.  Overall it was a good appointment on the chemo end of things and we’re so thankful for that.  Lord willing, we’ll have no other hiccups before we return on July 8th.

Check out this car!

Check out this car!

On a brighter note, it hasn’t been all doom and gloom here.  Back in February when we attended the Roadster Show through the CCA, we made a connection with the Columbia River Camaro Club.  They were the club that donated the wagon that Andy picked out.  Right before Memorial Day weekend, I got an email they were having a car cruise and would be coming right through our town.  They wanted to know if we’d like to come have a private showing of the cars.  We jumped on the opportunity and were honestly blown away by what unfolded.  Chuck & I were expecting a dozen or so cars to come, but there ended up being about 40 cars in the cruise.  It was so neat, but overwhelming in the same breath because they all came to meet Andy.  It was fun to see all the shiny cars and meet some really nice people.  I think it was a nice opportunity for the members to see the child they touched through the wagon they donated.

Yep, looks like a "Bad Idea" for sure!

Yep, looks like a “Bad Idea” for sure!

Lastly, cue the drumroll – today marks 13 months left of chemo!!!  It’s so wonderful to watch the countdown begin.  I’m sure Andy is rather counting down his days on crutches, and I am too, but I’m really most excited to get to the end of his cancer treatment journey and begin our countdown to hearing the words “cured”!  We’d appreciate prayer that his leg heals up nicely and quickly.  That his attitude would remain positive and that he can endure the frustration and difficulty of this type of injury with a smile on his face.

“I will praise the Lord at all times.  I will constantly speak his praises.” ~ Psalm 34:1
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