Check out my new shirt!

We had the privilege of staying at an amazing place called Give Kids the World (click the link to learn more). This resort is only for children on wish-granting trips, so it’s pretty exclusive. It is a little village nestled in Kissimmee that is like entering a fairytale land. The village has all any child or family could want on a vacation – a great pool, fabulous dining options, friendly faces, fun activities, and a nice cozy place to sleep.

Goodies from Horizon Air!

To get to Florida, we made a 6ish hour plane flight and were even picked up at our house and delivered to the airport in a snazzy black SUV. Good thing is was a big rig since we had a lot of baggage with six of us. One of our Make-A-Wish volunteers met us at the ticket counter and we were escorted right to the front of the line to check-in. I had some great photos of Andy helping load the bags onto the carousel, however a camera malfunction deleted them. After check-in, we were escorted to the front of the security line as well, so that made traveling through the airport super easy.

Ready for take-off!

Andy was welcomed by the Portland Horizon Air staff and given a cute little aviator teddy bear, autograph book, and snack pack. We even got to board the plane to Seattle first and meet the pilot!

At LEGOLAND!

Once in Orlando, we got our rental minivan and headed for the Give Kids the World (GKTW) village. We were greeted by the sweetest lady. Most of the people who are working at GKTW are volunteers – they have about 1500 volunteer positions per week to fill! Since it was nearing 8pm, the lady gave us information on the village and how we could eat dinner, then escorted us to our villa. The villa was a cute little duplex that was perfect for our family and right near the pool!

Practicing to be a “ship captain” at LEGOLAND.

At the village, there is no cost for anything. All guests can eat three meals per day plus there are a few options for snacks and extras if you’re still hungry. The best part is the ice cream parlor is open from 7:30am to 9:30pm so you can eat ice cream all day long! There are neat activities each day for the families to partake in. We got to go Trick-Or-Treating, visit Santa, attend a birthday party for the village mayor (a large bunny names Mayor Clayton), see characters from Disney and Universal Studios, be a part of “village” idol, watch movies on a big screen by the pool, and so much more…and that was all just at GKTW.

Surfing USA – a photo spot at GKTW!

Outside the village, we visited 7 different amusement parks in 5 days. This trip wasn’t for the faint at heart for sure. It was a lot of walking and doing, but we knew that going into it. We knew that in order to rest, we were going to have to come back home. One of the great benefits of staying at GKTW is that the wish child gets a “magic” button to wear on their shirt that gets you to the front of lines in all the parks. And while there was still plenty left to see at the Disney World, Universal Studios, and LEGOLAND, we got to see plenty thanks to Andy’s magic button.

Family photo with a crazy one-eyed guy.

Honestly, this trip spoiled us rotten and it was really a fun treat after the scary and crazy year we’ve had. A time to just relax and be a family together with no worries or cares besides having a fun time together.

A highlight at Universal Studios was meeting Doc Brown!

Since I’ve neglected updating on Andy, I’m sure it’s obvious that no news is good news. He’s been doing really well and is more and more like himself with each passing day. Right before our trip, he even graduated from physical therapy. His therapist concluded that he was doing more to help himself than she was, so she told us to bring him back if we saw a reason to, but otherwise, just keep working on his flexibility and core strengthening.

With Popeye and Olive at Universal Studios.

Andy had chemo on April 16 and weighed in at a whopping 62.7 lbs. He had a back poke of methotrexate that day and then a squirt of vincristine in his port, then his usual monthly at-home oral medicines. His counts were good, but his ANC was 2240, so higher than the range he’s supposed to be in. They warned us if it was high again the following month, meds would be bumped up.

With Minnie!

Well chemo day rolled around again this past Tuesday, May 14, and his ANC was still too high – 2020. So the protocol is to bump up his oral 6MP medicine in an effort to lower his counts to the 500-1500 range. I have to take him down to get labs down in two weeks to make sure his counts are falling to the appropriate range. Apparently all those waffles and donuts for breakfast at GKTW helped his weight because he was 67.5 lbs yesterday!  This chemo treatment he had no back poke and just a quirt of vincristine in his port.

At Epcot – Mater covered in flowers!

In other exciting news, Andy got his first haircut in a very long time on May 4. I was a little sad to cut it, but it was getting too long on his neck and he had quite the little sideburns. I’m used to it now, but it took a few days. I miss those little sideburns and might let them grow back. I saved his hair locks just a like a mom saves her baby’s first locks. I can’t believe how little hair I actually took off his head; it was the tiniest little bit.

A family photo with our favorite “cars”.

All in all, we’re just feeling so blessed with how well things have been going. Andy’s health seems to be great and our Make-A-Wish trip was more amazing than we could have ever dreamed. Now if we can just get school wrapped up by the end of June so we can enjoy some summer playtime and make up for the lost time of last summer. Thank you for continuing to pray for Andy’s health, it means more to our family than we can express.

“And give thanks for everything to God the Father in the name of our Lord Jesus Christ.” ~ Ephesians 5:20

Josie’s Picture to Andy

I actually started writing a long over due update the other day, but I am pushing off finishing that for a few days.  Right now, my heart is broken for the Jett family as their sweet 7 year old, Josie, lost her battle with cancer on Wednesday.  This just hits too close to home for me since we know this family from the hospital.

We met them last summer when Andy was inpatient for chemo and Josie was just getting her diagnosis.  Andy & I attended Josie’s birthday party in the family lounge at Camp Randall to celebrate her turning 7.  Since it was an impromptu party, Andy colored her a page in his coloring book and gave it to her as a gift.  In return, she drew a picture for him that has hung on our fridge ever since – a reminder of this family and to pray regularly for them.

My heart just aches right now.  It’s the first family we’ve personally known that has lost a child to cancer and, sadly, it probably won’t be the last.  As we have learned, cancer isn’t choosy.  Will you please pray for this family?  I don’t even want to imagine what they are going through as it hurts to me too much.  Hug your kids and loved ones tight and tell them you love them because only God knows what tomorrow will bring.  I still can’t bear to tell Andy the news.

“Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” ~ Psalm 23:4

Andy painting a birdhouse after his first chemo treatment.

Ready to kick cancer’s *bleep*!

Andy & mom happy to have the first day of chemo all finished – way to go Andy!

One year later…what a superstar you are Andy!

 ”May the Lord bless you and protect you.  May the Lord smile on you and be gracious to you.  May the Lord show you his favor and give you his peace.” ~ Numbers 6:24-26

Digging at “the dirt site”.

Both Chuck & I still get asked regularly, “so Andy’s all done with chemo then, right?”. I’m not sure where this notion comes from, possibly because he has hair now and looks pretty normal and healthy. Unfortunately, we’re still closer to the starting line than the finishing line – July 12, 2015 is a LONG way off according to my calendar. And once that date rolls around and he takes his last dose of chemotherapy, he still will have monthly check-ups for a year and then will be scaled back to less frequent, but ongoing visits to monitor his health and make sure his cancer hasn’t relapsed will go on for years.  Treating leukemia is an ongoing battle that isn’t won quickly.  Heck, he won’t even have his port removed until 6 months post his last treatment, which should be about Christmas 2015.

“It’s serious work here, stop taking pictures mom!”

Andy had chemo on March 19. He completed the first full cycle of Long Term Maintenance and is now started on the second cycle (each cycle is 84 days long with three trips to the oncologist for labs and office chemo – more trips of course if he gets a fever or any other ailments pop up). At his chemo appointment, he got a spinal tap of Methotrexate (aka back poke which we find sounds so much nicer) and a squirt of Vincristine in his port. All his labs looked great and so he had no dosing increase of his at-home medications. He even gained a smidge of weight, weighing in at a whopping 65 lbs!

Can you find Andy?

He also had an ultrasound on his arms and neck that day to check the status of his blood clots. The clotting is arm and neck is mostly dissolved with some residual stringiness left behind, which apparently very normal and will most likely never go away. The bottom line is the blood flow through the areas is good so there are no added concerns for him at this juncture. He will continue to have once daily injections of blood thinner that will continue until he gets his port out.

Evening bike ride along the river.

He resumed physical therapy the following day, March 20. He had the same therapist he originally had and surprised her by surpassing all the goals she had planned for him! I told her to get some hard stuff figured out for the following week and don’t be afraid to work him. So this past week she challenged him with some harder things, but she said he did very well. He really needs to work on his muscle tone, particularly his core muscles and also gaining flexibility.

One happy face!

Last Saturday, March 23, we had the pleasure of going to a fundraiser for a local cancer support group that supports children in our very own county. The lady that started the Dino Doozer Foundation has a heart of gold and has taken the dying wish of her own son very seriously. She promised her son, who was stricken with NF and a rare cancer, that she would help other children who were just like him to be able to forget about their ailments for the day and to have something fun to look forward to.  We were honored that she invited us so that Andy could be a face of one of the children in our community that is affected with cancer.

Ready for a night out!

Since today is Easter, it seems fitting to share something I recently read on a blog I follow. The author was paralleling our personal lives to the life of Jesus dying on the cross. She shared how we all have our own “Fridays”. Those days when our universe is shattered and there is nothing left but tiny pieces of the world we once knew. But in due time, we will rise up and be whole again. While the rising up may not take place this side of heaven, one way or another, Sunday will truly come to each of us who follow Christ.

Up for bid at the fundraiser, driving this fast machine 30 laps around the race track!

Her message really struck me because I feel like I’ve been living in a world that is continually *Friday*. Not the TGIF-type of Friday, but the Friday that is a heavy burden and a dark cloud looming overhead. I finally have sun peeking out now and can feel my sense a joy coming back. Our *Sunday*, Lord willing, is just right around the corner. I see it in so many facets of our lives, but particularly in the area of Andy’s improvement. Andy is jumping now, something that he wouldn’t do even with a lot of coaxing just a few weeks ago. He is now running. It’s not perfect running, but it’s a step in the right direction. He’s playing outside and digging in the dirt. That is huge for him. Until recently, he just didn’t have the physical strength to play much outside. It makes my heart want to burst with happiness watching him playing outside in the dirt. Digging like there I no tomorrow on “the dirt site”. He has literally spent hours upon hours outside digging the past week. So many things are finally starting to get back to normal and life is beginning to feel joyful again. Sunday really is coming.

Coloring is serious business!

“God showed how much he loved us by sending his one and only Son into the world so that we might have eternal life through him. This is real love – not that we loved God, but that he loved us and sent his Son as a sacrifice to take away our sins.” ~ 1 John 4:9-10

Our little fish!

Today marks the day where we have com full circle. Andy’s neck was noticeable swollen one year ago today. The kids had stayed at their Grandparent’s house for a sleepover the night before and I got a called from my mom-in-love saying, “not to alarm you or anything, but Andy’s neck is noticeably swollen this morning”. I told her not to worry, that is was surely nothing and if he was feeling fine, then relax. When he got home, I checked him out and it was definitely swollen, but I wasn’t worried because he had had a cold and I just figured he was an extension of that – some random infection. Instead, it was the day that forever changed our family’s life, yet we blissfully had no idea the upheaval that was about to come.

It’s fun to swim at the YMCA!

This past Friday, I spoke with Andy’s local doctor who referred him to Portland. I wasn’t expecting to see her, but when I did, I just had to thank her for being so proactive and on top of things. Her quick actions ultimately helped Andy to be a low-risk leukemia patient by being diagnosed so early. She told me at the time she didn’t really think things were going to be so dire. She sent him for the CT scan and thought he’d have some infection in his neck, obviously the story turned out completely different. She’s so sweet and I love she’s a Christian. She told me that she’s been praying for Andy and that she is so pleased to see me and know that that he is doing so well. Her genuine caring means so much to me. I’m sure it’s not often enough that doctors and nurses get thanked for what they do, but I try to make it a point to thank Andy’s care providers at each appointment for all they do for him and our family. They are the make it or break it when you have a hospital stay or appointment and it’s so important to me that I show gratitude for the care they give our family.

Cannon Ball! This picture totally cracks me up – it’s just happy Andy and warms my heart.

Here is the start of my original post:

I’ve put off writing this entry long enough. It’s so weird to me that we’re closing in on a year of living life with a cancer diagnosis. There are have been so many times recently that I have finally felt free from the weight of cancer. Not having to drive to Portland umpteen times a month has definitely helped (we logged in nearly 10,000 miles last year), but it’s also left a big hole that has been hard to fill. Our schedule was dictated for so long by doctor’s visits. Now it feels rather empty. I was warned that I’d probably feel like this. Honestly I laughed and thought to myself, “as if”, but going from multiple weekly visits to only one visit per month is really weird. I partly blame it on the dreary Washington weather and think if it was summer and the sun was shining and we were always camping and playing at the beach it would be different, but really it just doesn’t feel that normal to me still. It’s not like I miss the staff at the hospital. It’s just hard to describe. It’s a weird emptiness. Like trying to pick up the pieces after they have been scattered on the ground for such a long time. Some of them are missing and they are hard to find so they can get stuck back into the puzzle of life.

A rousing game of Apples to Apples – always a family favorite!

Other events have made this transition a little difficult for me too. Things go along fine and we feel like we’re back in the groove of things, and then something will come along and shake me up. Recently we learned that a little girl who we met through the coarse of Andy’s treatment has relapsed. She has a Wilm’s tumor and this is her second relapse. Now she has to once again endure chemotherapy and fight for her life. This precious girl is only 5 ½ years old. I haven’t told Andy because I don’t want him to worry about his own health, but this is so upsetting to me. It’s just not fair. Another shake-up happened when we learned of a cancer diagnosis of a gentleman from our church. After some testing, it appeared the cancer was pretty contained to one area, but when his doctor went to remove the cancerous tissue, he found it was drastically worse than they anticipated. So bad his wife told me had his doctor known it was so bad, he wouldn’t have even operated. Even worse is there really isn’t much options for treating his cancer. He will undergo various chemo meds and radiation, but he really needs a lot of prayer and a miracle. So very heartbreaking. And really, there are a million more stories just like those two and hearing them hits too close to home and it’s often more than I can bear.

Andy’s dream come true…a picture with a stackbox! That boys loves anything trucks, ships, or heavy equipment.

On a lighter note, Andy has hair!!! It’s so sweet and downy-soft like a baby. His hair never grew very quickly and I can see it’s going to be quite some time before he has his first haircut. It’s still sparse and you can see his scalp in spots, but overall it’s filling in nicely. I was a little worried it was coming back lighter because as the hair started coming through it looked blonde, but now it’s definitely brown. His lashes are long and beautiful too. He even has hair growing back on his sweet little legs.

Lookie, hair & lashes – woo hoo!

Overall he is doing really well. He’s really enjoying all his extra time. It’s a slow progression to build his body back up, but he’s been going swimming several times per week and, when it’s nice outside, a little bike riding. We had a beautiful weekend a few weeks ago and he managed to ride around a local lake on the bike trail on both Saturday and Sunday – it’s about 3 ½ miles around. He had some breaks along the way, but did so well, dad sprang for taking the whole clan to Baskin-Robbins for ice cream!

Building an arch at OMSI – it was a family effort to build it.

Andy still cannot run by himself. Maybe he just chooses not to, but he says it hurts his sides. He will run pushing a grocery cart or some other item that stabilizes him and he has ran holding hands with me, but not by himself. We didn’t see his main doctor when we went to his last appointment, so we’ve continued to dodge the “physical therapy” bullet. I’m still on the fence about if we should take him. It’s not that it will hurt him, but it’s 3 hours out of my day for driving and the appointment. We’ve been trying to do things at home and I recently broke out the Pilates exercise machine too. He seems often like he’s two steps forward, one step back. I know the swimming, biking, and playing are all going to build him back up because I’m witnesses it happen, but he’s often lacking the desire. I find it odd he’s not fighting more for getting stronger, but maybe it’s the weather for him too. He’s such a stubborn kid, but he just is stubborn the wrong way right now. I pray his heart softens and he will see the value in getting back to his old self. I’m saddened that he doesn’t want to play outside more often. He was my kiddo who would dig outside in any type of weather, it didn’t matter, it was his outlet for fun and what he lived for. Now he chooses to stay inside and play or color. I hope that he warms back up to going outside soon. Maybe when sunshine returns it will be easier or maybe I just have to kick him outside and force him to like playing in dirt!

At Chuck E. Cheese celebrating making it to *Long Term Maintenance* with his cousins!!!! It was a great day and we had the place to ourselves, even better!

He’s had two appointments since my last update. They were both very routine. The first was on January 22 and he had a back poke of Methotrexate and a push of Vincristine in his port. His labs were great and he weighed in at 63.1 lbs. His ANC was 1450 which was right where they wanted it to be. His second appointment was on February 19. This appointment was only a push of Vincristine in his port and lab work because his weekly Methotrexate is taken at home orally during this part of his treatment cycle. His labs again came back great, however his ANC was a tick higher at 1720. The goal is to keep it between 500 – 1500, however his daily oral medications won’t be changed until he’s been out of range two months in a row. So for now all his oral medications stayed the same. The oral medications are what keeps his immunity suppressed and vary based on the day of the week and point in his cycle. Thankfully we’re given a calendar each month. Basically he has Prednisone twice per day for the first five days of his cycle, oral Methotrexate once per week so long as he doesn’t get a back poke of Methotrexate, Septra antibiotic twice daily three times per week, calcium supplements twice daily, and 6MP every night at bedtime. I’m to thankful that I have a trusty pill box to keep this all straight!

Andy & Will – look at all those tickets!

At his most recent appointment, he was 64.4 lbs, so a little bump up. I inquired about his weight gain and wondered if only 1 lb was okay since he was about 70 lbs when he was diagnosed. His provider that day told me it was great and reminded me that he’ll be doing little growing while he’s on therapy. Um, what?!? She told me that while kids are on chemotherapy that they really don’t do much of any growing. It basically pushing the pause button on growth, but as soon as therapy ceases, he will have a rapid growth spurt. I knew that he hadn’t really grown because he’s the same on our wall growth chart at home as when I measured him back in April, but the real proof came when I compared him and his cousin in height. I was surprised his cousin is now several inches taller. Andy is only two months younger and they have been close to the same height for as long as I can remember and Andy actually surpassed him a year ago Christmas by just a smidge. It’s weird to me to think Andy will stay about this size for another 2 ½ years. He was always tall for his age thanks to daddy’s tall genes, so maybe he won’t look too short when he’s done with his protocol.

Mommy & Andy

Andy had a follow-up MRI on Wednesday, February 27, to scan his brain to see if the clotting he had back in May had dissolved. He wasn’t looking very forward to the MRI since it’s nearly an hour of holding still. He lucked out this time because the technician had some headphones so he could listen to the radio during the scan. Apparently, the old pair they had were too big to fit inside the device that goes over the head during the scan so this option is new at this location. It was a welcome relief to him and helped the time go by much faster. The tech even complimented him on how well he held still. I was so thankful because he had a terrible cough from a cold he caught and I was worried he’d start coughing during the scan and they’d have to repeat some of it. Thankfully that wasn’t the case! I got a call from the oncology office the next day sharing the scan showed no signs of any clotting and is a “normal” brain scan – praise to God! I wasn’t worried it would be a bad scan per say, I was just praying that it would look good and the results we got were the best possible ones. What makes this even better is that his doctor lowered his blood thinner dose from therapeutic to prophylactic (ie: a dose that’s preventative to ensure that he doesn’t have any more blood clots). He now has only one shot per day and the volume is less too (8,000 units once per day vs 10,000 units twice per day). He was so excited when I told him the news and really who could blame him? He’s had in the neighborhood of 650 injections of just blood thinner since he got his first clot – ouch!

Auntie Sarah & Andy

Andy’s next appointment is March 19. He will have a back poke of Methotrexate and a push of Vincristine and the usual labs, plus he is scheduled for an ultrasound to check his arm and neck where he had the other clots. I know back in May they found the ones in his arm all dissolved and I’m hoping the one in his neck is gone too.

Swimming with cousins and brother Will

Things really are pretty smooth sailing compared to how they were. It just adjusting to our new “old” life again. I’m thankful for all that is behind us. I can’t imagine having to relive last year. When I look back at the things I wrote, I am overcome with emotion. It takes me right back to that day and even tho I know the outcome, it’s still really hard because I can still feel the way I felt at the time. I’m so glad we didn’t know all the ups and downs we’d face in the beginning, it would have been too much to know all those things. I guess that is why we, as humans, have a limited vision. God knows we can only handle seeing what is set in front of us. It’s too much to see and know what the future holds. He sees everything, but knows the we are too fragile to handle more than today. I was cleaning out my filing cabinet the other day in preparation for filing our taxes and I found receipts and different paperwork that took me back in time. A receipt for some dress pants I bought Chuck for the father/daughter ball last February. Andy had cancer then, but we didn’t know it yet. A receipt from the outlet mall on my birthday when we stopped to buy Andy some longer jeans on our way to Seattle for the weekend (he’s still wearing them and they are still too big!). He had a swollen neck, had been to the doctor, and was taking an antibiotic. We just expected it would go away in a few days, yet he was filled with cancer. Oh how it breaks my heart to think back and not know he was so seriously sick. No one knew, there was really no reason to suspect he had anything but an infection. While I was cleaning right after Christmas, I found Andy’s calendar notebook I made him for school. I opened it up and time was frozen. The last date he filled in was the day before his local doctor sent him to Portland for more testing. The day our world was completely turned upside down. I pray that we never have to have another day like that, I just don’t think my heart could possibly take it. I praise God every day for his healing hand being on Andy and how he’s brought our family through this awful journey having more faith than I ever knew was possible. We still don’t understand why this journey is ours, but I continue to pray Andy’s story only brings glory to God.

The last page in Andy’s Calendar Notebook…the day before our world was turned upside down.

The kids’ memory verse last week for Friday school seems very fitting for the road we’re on.

“Trust in the LORD with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths.” ~ Proverbs 3:5-6

Because I can’t resist the out-takes it takes sometimes to get a picture…

I have wanted to write an entry, but after the newness of the new year wore off and we finished up a little painting home project, I made my way from the *Andy* treadmill to the one that needs me to focus on getting our life, and particularly homeschool, back on track. It’s been a hard transition because I feel like all those weeks, seven to be exact, made the transition back to school as bad as it is when summer break is over. Everyone is excited for the first day, then they remember that school is work. We read books, do math problems, have spelling and grammar so we can grow smarter, but just like any work, it’s hard (hence the name). I hate that we had so much time off because I feel like we barely got started in the fall before our schedule became so crazy. I am working to give myself a wide berth because I know I didn’t have much choice with the slew of Andy’s appointments, his two hospital stays, and then our break to celebrate Christmas. Still I can’t help be feel overwhelmed and like I’m trapped under a mountain of things to do.

This one is even better! Can you tell they are thinking, “great idea mom”?!?!

It was eleven days from the start of Long Term Maintenance until Andy had a recheck a week ago Monday (January 7th). It was lovely to be away from the hospital for so long. Word even leaked to us that they had been talking about us and wondering how we were doing since it had been so long since we were last there. One gal was even going to call me because she missed seeing me – how sweet that we are missed by those who care for us each time we step through the doors at Camp Randall. While the feeling is mutual (the caring part), I have to say that I’m not to the point of missing anyone there yet. They have loved on us and been so caring and compassionate during such a dark season of our lives, but I don’t think I’ll ever miss going there. Going there is just a reminder that Andy is fighting cancer and that isn’t something that I need to be reminded of.

I’m Bacon!

Of course we expected his appointment to be quick since it was just labs, but I should always remember to pack our bag for the long haul because life at Camp Randall is anything but quick. His labs came back really great except for his hemoglobin. His ANC was 1480, right where they wanted it to be (between 750 – 1500) and his platelets were low but still in a good range. The hemoglobin on the other hand was 6.6, which left us scratching our heads because Andy showed no physical signs of low hemoglobin. His doctor decided to recheck it and then the lab came back at 6.3! Eight is the cutoff point, so we knew he definitely needed a transfusion that day. Unfortunately, a blood transfusion is a very lengthy process.  It takes time to cross-type and match the blood, clean the blood to make sure it’s free from anything harmful, and then the infusion itself takes 3 hours from start to finish. All in all, it took about 6.5 hours from appt check-in at 1:30 pm to discharge at 8 pm. Since the transfusion was started so late in the day, we had to go up to the inpatient floor because the clinic was closing. It was a long day that we weren’t prepared for, but yet again we’re so thankful for those who donate blood.  It really does save lives!  On the bright side, we got to see many of Andy’s favorite nurses up on the floor and because we were there for shift change, we saw a few favorites from night time that we wouldn’t normally see unless Andy was in-patient.

Thanks Professor Pricklethorn!

Andy’s next appointment is on Tuesday, January 22. He will receive his second chemo treatment of this phase. It’s another back poke of Methotrexate and push of Vincristine into his port. It should be pretty quick unless he needs more blood. I think as things go, this should level out and he probably won’t need much more, if any, blood products for the duration of his treatment. We’re so thankful that he’s been tolerating his at-home chemo meds so well. I had to buy a pill box with am/pm compartments for each day of the week to keep track of everything. I am not sure why I didn’t do this in the beginning, but I really should have. He also gained a few more pounds and was up to 63 lbs. when they weighed him last week, which is up 6 lbs. from his all time low right before Christmas. He’s been eating so well and I can’t wait to see what he weighs next week.  He’s just looking so great and his personality is really shining through. I feel like good old Andy is back. His hair is even starting to grow back. He’s like a little fuzzy peach and reminds me of when he was a baby. He didn’t have much hair when he was born and had a little soft, cute head that I loved to kiss and still do! I was a little worried it was going to come back blonde because it was looking so light at first, but the more it grows you can see it’s definitely brown still which made my heart smile since I can’t imagine him any other way.

Thanks Santa!

When he goes back on January 22, his doctor said if he’s not running, he has to start back with the physical therapist. I was sure he’d not be running by then, but the last few days he’s made a lot of strides. We found if he walks with his arms out to his sides like an airplane, he moves so much better. He has also been having fun doing different acrobatic moves like summersaults and freefalling on our bed. Things like this give me hope that maybe he’ll be able to pull off actually running by next Tuesday. I sure hope so because I’m not looking forward to the three hour chunk of time PT burns up. I can tell his core muscles are still really weak, but we’ve been having him help us a lot with things around the house to help build strength. Things like unloading the dishwasher, taking something to the other room, or getting flour out of the pantry seem like every day chores to him, but right now they are doubling as strength training for his weak body. He even push the grocery cart all through Winco twice in the past week for me, then unloaded most of the groceries onto the belt, and helped with the bagging too. The first time he helped me, he commented how tired he was after he was all done and then his arm muscles hurt for a few days. The second trip, which was a much bigger grocery trek, he didn’t complain at all about being achy, so I’m thinking he is getting stronger and gaining some muscle mass. When his muscles were hurting, I reminded him that he was strengthening his muscles just like a weightlifter would and that there is often times pain when you’re making your muscles stronger. He has even played outside a bit. First in the snow with his truck and then he went outside a few times to try to dig in the dirt.  The digging is just too hard from him right now because he doesn’t have the strength. It broke my heart when he came in crying that he can’t do it. It’s hard because he really is our “can do” kid and is always happy to prove that he’s big enough and strong enough – guess that is a true quality of being the little brother.  I’m sure he’ll be back digging soon, more baby steps.

The *official* Mack Bull Dog pose!

Even tho Christmas has been three weeks ago, I want to remember a few fun surprises that Andy received. From a sweet family friend who also endured cancer as a child, Andy got his very own talking stuffed bacon! A perfect gift for a bacon lover! Of course you can never go wrong with gifts from Aunt Jenny. She’s so creative and comes up with the best things. Last January we took a family trip to the Great Wolf Lodge water park and Aunt Jenny captured a picture of the three boys and in it Andy was making some tuff guy face. She found a place that made giant cardboard cutouts and ordered this huge cutout just for Andy. She added a speech bubble that says, “I kicked cancer’s bleep!”.  I just love it and every time I look at it, it makes me smile and truly warms my heart! And lest we not forget the magic Mr. Santa Claus brought to Andy’s stocking – his very own authentic Mack Bull Dog hood ornament. Our family had a truly wonderful Christmas and we are blessed beyond measure.

I kicked cancer’s bleep!!!!!

On behalf of my entire family, we appreciate those who continue to lift Andy up in prayer. We believe God is the ultimate healer and answers prayers. Andy still has a long road ahead of him before being deemed “cured”. We deeply appreciate continued prayers for full healing, strength, and endurance as we continue down this windy road. He has a fighting spirit and I know it will prevail.

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. ” ~ Romans 8:28

All systems ready for Maintenance!

It was a shocker to us to say the least. Last Thursday, Andy needed another AT3 infusion and his ANC was 20 (tho the manual count indicated it was a bit higher 160 that day) and his platelets were 67, but low and behold, today his ANC was 820 (manual was 920) and platelets were 173 – crazy!  He needed his ANC to be 750 and platelets to be 75 to go forth, so he passed with pretty good measure. Obviously his body was on the rebound and the labs last Thursday were just the tail end of the low numbers. So as an early Christmas present, Andy started Maintenance with a back poke of Methotrexate and a squirt of Vincristine in his port and will be on various oral medicines throughout the month.  I need a scorecard to keep track of the medicine schedule, but thankfully his nurse today made me a calendar so I don’t goof up.  He also got another dose of AT3 today.  I was hopeful it would be his last, but I just heard from his doctor and his level was still at 30 which is too low so he’ll have labs drawn to check it on Thursday to see if he needs one more dose. He also is up 2 lbs from Thursday, which was great news.  I think the weight gain is more a product of his appetite returning now that the chemo is finally out of his system rather than the appetite stimulant that was prescribed to him last Thursday in response to him reaching an all time low weight of 57 lbs.  I’m sure between the Prednisone that he started today (it goes for five days) and all the rich holiday foods he’ll be around, that we won’t have too much trouble packing on some pounds.

First day of Maintenance – woo hoo!

He’s doing well tonight and is happy as a clam. He’s bouncing around just dying to open Christmas presents, aren’t all kids on Christmas Eve? And while it would seem that Andy starting Maintenance today is the best gift ever, it really isn’t (tho it’s right close to the top). The best gift ever is God sending his son, Jesus, to bridge the gap between God and man. Coming to save all of mankind from our sins if we just simply ask Him into our heart and life. Tomorrow my family will celebrate this very special birth. I’m so very thankful for this precious birth so I can have a personal relationship with God and live in Heaven for eternity. If you don’t know the Christmas story, I urge you to read Luke 2:1-20 in any Holy Bible.  May you and your family have a blessed Christmas.

Bald really is beautiful!

“For unto us a Child is born, Unto us a Son is given; And the government will be upon His shoulder. And His name will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace.” ~ Isaiah 9:6

Santa Baby

While we waited around on Saturday, our family got to attend a Christmas party at Randall put on by MilesForMolly.org and Randall Children’s Hospital. It was an amazing party and a fabulous perk of being inpatient was that we got priority status to see Santa so we bypassed the huge line and got right to the front! Andy’s Child Life specialist told us that they invited over 500 families, plus anyone inpatient during the party was invited. The criteria for the invitation was staying 5 nights or more in the hospital during 2012 – um, check, we got that 7 times over!

With Santa at Randall Children’s Hosptial Christmas Party

Yesterday (Monday), Andy had a lab check-up and received his AT3 infusion. His labs indicated he’s recovering from the past few weeks of chemo.  All his numbers were up and he didn’t need any platelets or red cells today – yay! The numbers are still considered “low”, but he’s trending toward recovery, so that is beautiful news. His white cell count is slightly up from Saturday to .5 (that is 500 white cells in his body, while 4,500-13,000 white cells are considered normal, so he’s still pretty darn low – it’s actually flagged “critical” on the lab printout). He also now has an ANC – it’s only 30, but hey, that is better than zero.  His weight has been decreasing quite a bit in the past few weeks and he’s down about 5 lbs from what he was just a few weeks ago.  For most people that isn’t a big deal, but he now weighs only 58 lbs and was about 70 when he was diagnosed.  His doctor talked again of an appetite stimulant, but said he was okay waiting out the week to see if his appetite picks up.

Team Andy Captain (aka Daddy) & Andy with Santa

His finger is still hurting him and still looks ugly. He was sent home on some oral antibiotics which he hates. He threw up the liquid in the hospital so his doctor changed him to a pill, but it’s pretty big and a capsule to boot so he has to swallow it whole or endure me opening the capsule and stirring the powder into something soft like applesauce which he totally hates, so swallowing the “horse pill” it is.

Under the Christmas Tree

Andy got a fun surprise from the “box man” yesterday (at our home “box man” = UPS/FedEx delivery person). It was actually fun for us all because it was a packaged delivered to Team Andy from Volvo in North Carolina and none of us could figure out what it could possibly be or who the sender really was. Thanks to a few helpful brothers, Andy was able to get the package opened and found a super fabulous surprise inside…a care package directly from Mack Trucks! Someone daddy knows through work shared Andy’s story with corporate Mack Trucks and they sent him off a special package. I wish I would have recorded Andy’s reaction as he opened the package, he was so elated and in light of all the troubles of our country, it is a breath of fresh air that there are still caring and kind people in a world filled with evil and hatred.

Thank you Mack Trucks!

I’m hoping we have an uneventful week. No fevers and no problems, nothing but time to finally enjoy the anticipation of Christmas. Andy has an appointment for more AT3 on Thursday, but his doctor is letting us skip his labs today since he’s trending the same, so hopefully there are only two trips to Portland this week. Then Monday, Christmas Eve, Andy is scheduled to start Maintenance. At this point I’m doubtful that he’ll be starting. He has a long way to recover since his ANC has to be 750 and he’s only at 30, but miracles do happen. Yes I want him to get started, but part of me wants to wait until we get past Christmas. It’s in the Lord’s hands and we know that he has Andy’s best interest at heart. I will rest in the fact that His will will be done and he has the perfect time for Andy to begin the final phase of his cancer treatment.  We’re in the home stretch and I can see the light at the end of this long tunnel.  His treatment is far from over, but a taste of “normal” should be returning very soon.

“Some trust in chariots and some in horses, but we trust in the name of the Lord our God.” ~ Psalm 20:7

Because Daddy says journal entries are better with pictures, this was taken on 12/6/12 in the clinic while we wait for lab results.

If it’s not one thing, it’s a dozen. Monday’s appointment was Andy’s last chemo until he starts maintenance. That was really exciting for us because we finally feel like the end of the super hard stuff is really near. Unfortunately, Andy’s appointment turned into six hours because his hemoglobin and platelets were both low again and he needed transfusions of both on top of his chemo and AT3 infusions. It worked out okay because we were there until 7pm and didn’t have to deal with rush hour traffic which I always like. His labs on Monday also indicated he had no anc/immunity which puts him in a very fragile state and is extra vulnerable to getting sick over something as simple as a hangnail because he has no ability to fight off any infection. It can only go up from here, right?

Fast forward to yesterday morning (Wednesday), I was excited we had no appointments and the day was really our oyster. Tuesday he had to have blood drawn in Vancouver at 1pm, but yesterday was a day full of possibilities. To embrace the day, the kids and I gathered around the kitchen table to make cute little candy houses out of graham crackers. It was quite amusing how difficult it was to keep them together while we waited for the royal icing to harden, but the kids and I persevered and were rewarded with some adorable Christmas cheer.  I’ll share some pictures of our creations soon.

Even tho we had a bit of fun and normalcy yesterday, Andy complained early in the day about his left index finger hurting him. Upon inspection, there was nothing but a little scab the size of a dot on his finger and it was red and slightly swollen. I offered a band-aid and figured it was just a little owie he acquired somewhere along the road of life. He continued to complain about his finger throughout the day, but it looked no different to me, still red and a touch swollen. Around dinner time he wanted me to read him a story, so we cozied up in daddy’s chair to read the Velveteen Rabbit. When I was done reading, his ear brushed the side of my face and felt hot. Of course I immediately took his temp and it was 100.6 – ugg, two of those in 12 hours and we have to take him to the hospital. We waited until daddy got home from work to retake it and it was 101.9 – hi ho, hi ho, it’s off to Randall we go.

We got to the hospital about 9pm and it was like lightening getting everything going. I later found out that they are supposed to begin antibiotics within 30 minutes of a neutropenic patient’s arrival, so the clock was ticking the minute we walked through the door. They did a CBC when he arrived and his anc was still zero last night and his platelets were down to 19, so he got another platelet transfusion around midnight. His finger looks more swollen to me today and his doctor peeked at it this morning. It could very well be the culprit of his fever since he has no ability to fight anything off. She told me this morning that the Ara-C he had a few weeks ago can suppress counts for weeks, so it’s hard to say how long it will stay this low. She said kids usually bounce back quickly after the first round, which he had in June, but now his bone marrow is extremely tired and it’s harder to recover very quickly (hence the name “Delayed Intensification”). It literally could be weeks before his immunity rebounds.

So for now, he will be residing at Camp Randall for a few days and is on IV antibiotics, one type is every 8 hours and one type is every 6 hours; both are broad-spectrum and will treat a multitude of things and hopefully whatever is ailing him. His doctor said this morning that usually at the 24-hour mark is when you’ll start to see improvement, but they also drew a blood culture and something could grow in that anywhere between the 24 to 48 hour mark, but of course nothing may show up at all. Today he will also get his next dose of AT3 since that was already on the books in his treatment plan.

I was reminded by his doctor this morning that we are “so close”. Yes so close indeed, but that doesn’t change the fact that we are all getting so weary battling all these ailments on top of cancer. AT3 infusions and blood thinners to control his clotting, extra lab draws to check is blood consistency, platelet transfusions, red cell transfusions, low anc, fever….it seems like the list just goes on and on. I pray that through all these trials Andy and our family is facing, that those we come in contact with will see the light of Jesus reflecting from us. That this dreaded illness will only bring glory to God. Will you please lift up Andy in prayer? Praying specifically they can find the cause of his fever and are able to treat it swiftly so he can go home. For his finger to feel better and the swelling to go down. Also for his anc, that his body will recover so he can not be in such a vulnerable position. Please also be praying for Andy’s siblings.  They are in such a tough spot too as they trying to juggle the crazy schedule we have.  I’m hopeful that we’ll be able to go home in a few days. He is still battling the fever and just had another dose of Tylenol to bring it back it down. On a bright note, Andy got a visit from the therapy dog, Bailey, today. She was a sweet golden lab with a gentle and calm disposition. Her “mama” was just as lovely and it was a bright spot in our rather dismal day.

“I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” John 16:33

Tomorrow it’s back to the clinic for AT3, to check his heparin and AT3 levels, and also a possible red cell transfusion.  His hemoglobin had dipped back down this morning, but since he wasn’t having any headaches, his doctor decided to wait to see if it would recover today.  Otherwise nothing else new, just excited to sleep in our own beds tonight.

“A happy heart makes the face cheerful…” ~ Proverbs 15:13