DC by Storm

7/31/2012: 9:00 AM

I can't believe over two weeks have passed since I last posted. So much has happened during that time.

Back in March, Davis was nominated by his teachers and given the opportunity to go to Washington, D.C. as part of the Junior Young National Leaders Conference. He was able to take part in the conference last week.

I know that we always worry about germs. We are always sure to weigh the risks with the benefits when it comes to allowing Davis to be exposed to tons of germs. His ANC (immune system) has been on the low side of healthy, and the doctors encouraged him to go, so he went.

The organization prides itself on helping children be independent from their parents, so we were away from Davis most of the time. Kyle, Annakate, and I spent our days sight-seeing, while Davis attended leadership classes and visited monuments and museums with his group. Kyle and Annakate spent the nights in a nearby hotel, while I spent the night with Davis. Although this wasn't ideal for him, it was the best way to make me accessible to him to give him his nightly and morning meds.

On Tuesday, we received a call from the conference nurse telling us that Davis needed to go to Urgent Care for an infected toe. He apparently picked a hangnail and it had become infected. The first Urgent Care doctor transferred us to a different Urgent Care center when she discovered that Davis had Leukemia. I called Stl oncologist while in transit, and she told me to go to the hospital. We ended up in Bethesda at a satellite hospital of Johns Hopkins. Five hours in a pediatric ER ended with a bacterial cream and an oral antibiotic.

Wednesday was rough for Davis. His toe was really making walking difficult. Arrangements were made for him to have a wheelchair. I was grateful for this, because I hated the idea that he would be sitting in a dorm room while his peers were out exploring.

We met up with him and took him out to lunch

View from Jefferson Rock at Harpers Ferry.

On Thursday, Davis and his group headed to the Capital for a tour. He called at one point and was telling us about how they were evacuated because there were two unclaimed bags noticed. He was feeding us bits about police and police dogs and safe cars. Not much more than an hour and they were back in the building. He sure has a story to share now.

Kyle is such an amazing dad. The little legs
wore out very quickly.

Thursday night, Davis slept in the Baltimore Science Center. He didn't provide us a ton of details, but he said he had fun and that it was hard to sleep in a museum.

Davis was able to see quite a bit of DC, and I know he enjoyed that part. I hope that he embraces this experience and the leadership skills that were taught. I think that learning to be a good leader is far more important than having your picture taken in front of the White House. Anyway, Davis loved it and is already wanting to go to the Boston Alumni Conference next year.

White House

WWII Memorial

Kyle, Annakate, and I enjoyed DC too. Well, I enjoyed DC. Poor Kyle. He was so sick of traffic and parking garages by the time the trip was over. We did use the subway some, but even it can be a chore at times. Annakate was super bored until I handed over my camera. Surprisingly, her favorite part of the trip (besides swimming with her friend Calista, eating Pinkberry, and going to DC Cupcakes bakery) was hanging out in the Smithsonian Museum of Art. I think she was going to take a picture of every single piece in that museum if I hadn't stopped her.



What took us hours to do in a museum, Kyle
could do in thirty minutes.

We really enjoyed spending time with the Fox family. Their daughter, who is a good friend of Davis', was attending the conference. Their younger daughter and Annakate are the same age, so Annakate had a friend to play with. I wanted to personally thank them for doing all the things great friends do. They booked our hotel, carpooled with us around town, listened to me whine nonstop about wanting Pinkberry, took numerous family pictures for us, watched our daughter, etc. They were awesome. Nothing's better than exploring a new city in good company.

We had planned to extend our vacation through the weekend. I wanted to head down to the beach since we were so close to the ocean. Davis' toe infection nixed that. The kids wanted to head up to Wisconsin to visit their cousins, but they were sick. So we came home.

Lincoln Memorial

Arlington

Davis is now fighting what appears to be a sinus infection. Luckily, his fever has remained under 100.4 when he does have one, so no trips to the ER yet. I am hoping that the oral antibiotic that he is on for his toe is helping him fight this sinus infection. The doctor will check him out on Friday.

Davis will have blood work on Thursday and chemo on Friday. Hopefully, the chemo on Friday will be routine. Chemo via port and a breathing treatment.

We couldn't be more happy for Jordan, a roommate of Davis' at Children's. He was diagnosed with Lymphoma back in July of last year (a week after Davis) and has sailed through his three month check-up. He will have his port removed on Friday. We are excited and patiently waiting for our turn to hear those words -- nearly three years from now. When we told Davis about Jordan's good news, he said, "Why can't that be me?" Sometimes I forget that he is eleven. Sometimes persevering seems just as difficult as everything else we have endured. Anyway, we are ecstatic for Jordan and know that Davis' turn will come.

Davis is looking fantastic. He has put on some weight and has a full head of hair now. We are definitely in a much better place than we were a year ago. I want to really, really thank you all for your prayers and positive thoughts. I am pretty sure that we could not have endured this thus far if is had not been for your thoughtfulness and lovingkindness wrapped around us. Please pray for us still. Even though the physical side effects of cancer aren't as evident, the emotional side effects still plague our home. Davis struggles with change, and a bunch of change is about to happen in the next few weeks. I am going back to work, the kids are going back to school, and it appears that harvest will be early. Please pray that this transition goes smoothly.

We believe that God is a healer and has His hand on Davis.

We will keep you posted.

Life and Death

7/15/2012: 8:52 PM

Davis had a wonderful birthday. The celebrations started last Friday and ended a couple of days ago. On his actual birthday, July 10th, Kyle and I were in St. Louis for a farm event, so Davis and his sister spent the day with Kyle's folks. They were in heaven. Grandma and Grandpa Coffey filled the day with fun activities that really made Davis' day special.

As most of you know by now, Davis' roommate Cory passed away on the evening of Davis' birthday. As soon as I found out, I texted my mother-in-law the news and asked not to pass the news along to Davis. Kyle and I wanted to be able to tell him and help him if needed. So on Wednesday morning, we sat down with Davis. He already knew what we were going to say and dismissed the conversation entirely. Davis is a thinker, and I know he processes his emotions (sometimes poorly) at his pace and in his way. I know that he truly believes that he is invincible, and I am pretty sure he thought that kids don't die from cancer - at least not the kids he knew. And even though he knew Cory wasn't doing well, he honestly believed he would get better. I knew Cory's death would have a profound effect on Davis. We respected Davis' right to sort things out, and we gave him space to do so. 

Davis has been struggling with headaches and belly aches for the last couple of weeks, but we have seen an increase in these symptoms in the last week.  He also has been complaining of being tired a lot too. We spoke to the doctor about this during chemo last week, and she contributed it to allergies and heat. The symptoms persisted - even worsened - this week.

Thursday, Davis had to have his billirubin, AST, and ALT tested. If you remember, last week his AST and ALT (liver function) were a tad high. Thankfully, the AST and ALT have come down, but his billirubin was up. The numbers are still within the Ok range for his chemo, so no more tests are needed until August.

In the spring, Davis struggled with some behavior issues (talking back, yelling, refusing to do what we ask, etc), and while they are not totally gone, they are much better than they have been. On Thursday evening, a side of Davis we thought was behind us emerged. He flipped out over things we would consider routine, non-issues in our home. He became very upset when Kyle informed him that we do not watch TV until chores are done or when we eat supper. Davis refused to eat and wouldn't do his chores until the TV was on. It was crazy. He would curl up in a little ball and hold his hands over his ears and cry. He would yell unprovoked. Davis' poor behavior escalated, as did his headache and stomach ache, and I called the doctor. It was agreed that Davis needed an evaluation.  So Davis and I got up at the crack of dawn on Friday when I should have been icing cupcakes and preparing my home for a birthday party and headed on down to St. Louis.

Not surprisingly, Davis slept the entire ride down (He does sleep or lay around a lot as of late). When we met with the doctor, I told Davis (as did Kyle before we left) that he needed to be up front and honest about his feelings and behaviors with the doctors. And he was. My heart was so broken as the conversation in the examination room unfolded. Davis told Caroline, a nurse practioner and a person with whom he is very comfortable, that he has been having headaches, belly aches, and sleeping a lot. I told him, "I know what you are thinking, Davis. Ask her." and he did. He said, "I think I am having a relapse, and  . . .you know . . . .well, Cory . . . ". This is when as a mother I am so full of every emotion and no emotion. I wanted to scoop him up and my arms and tell him that it was going to be ok, but it's not ok that children die from cancer. I wanted to shake us both from this nightmare, but we aren't dreaming. I wanted to undo every bad experience and spare him from the realities of cancer, but I can't. I wanted to restore his childhood and the carefree peace of youth, but it's been broken - unfixable, it seems. I was sad that these were issues he felt comfortable telling his doctor but not me.

Caroline reassured Davis that there was no evidence to suggest that he was relapsing. He also explained to Davis that he and Cory's cancers were not the same, and their cancer journeys are not the same. She told him that he doesn't deserve to be experiencing all of this. All things he needed to hear from someone other than his parents. I think he has reached that age where everyone else knows better than we do. After Davis' team met for a discussion, it was decided that Davis' depression and anxiety has worsened. The symptoms he has been having the last week or two all point to that conclusion. The doctors adjusted his medication dosage, and it is their thought that once school starts, we will see major behavioral improvement. Two reasons: medicine should be working better by then, and Davis needs structure and a bunch of activities to stimulate his mind so he doesn't worry so much. 

In the last two days, Davis has not complained of a headache or tummy ache one time. There's something to be said about peace of mind.

Friday night was wonderful. We had the family over for a huge birthday bash. Davis really loves spending time with his family, and to have them all over in his surroundings was a dream come true. We crammed fifty-some people in our living room and on our deck. After everyone had left, and he was sprawled out on the living room floor putting legos together, he kept saying, "That was so awesome. That was the best." I couldn't agree more.

We gave Davis the option to attend Cory's funeral. He opted out on Saturday morning. I was so thankful. After the emotional rollercoaster Davis had been on over the last couple of days, I was fearful of how he might react to the funeral.


Kyle and I knew that the funeral was going to be hard for us. But it was far more difficult than we imagined. Over the last few years, I have stood by half-leaved trees as I watched families bury two of my students. I remember thinking that the pain I was feeling was like nothing else . . . unforgettable tragedy. I was so arrogant to think that attending this funeral would be similar. I remember Cory's mother blogging about how she shares some experiences and stories on the blog, but saves others for no one else to know or enjoy except for those who took part or witnessed them. She commented on how so many words of encouragement, private conversations, and expressions go unnoted. I agree with her. And while I blog and expose so much of our lives, I reserve a certain amount of memories I hold sacred. Cory's funeral was sacred, and it pushed past the realm of long-term memory, and etched and seared itself on my mind and heart forever. Aside from all of the obvious reasons, we are forever connected and paralleled to this family in some way by cancer, by room 918. We will pray for this family every day of the rest of our lives.

Please keep Cory's family in your thoughts and prayers. They are starting a new, equally difficult journey. Please pray for Davis. He has endured more than most adults in his eleven years, and he is very fragile.


We will keep you posted.

One Year Ago Today. . .

7/8/2012: 3:01 PM

At 5:00 PM, it will be exactly one year ago that our lives were turned upside down. . . our hearts were squeezed and we were left stunned . . . our journey began. Davis was diagnosed with t-cell acute lymphocytic leukemia exactly one year ago.  I sit here and reflect on how different our lives are now -- better in some ways, scarred in others. I am amazed at how we have become stronger out of necessity and how we have been forced to grow beyond our believed limitations. I am deeply saddened that my children have been robbed of normal, care-free childhoods, and I am weary as our walk with cancer continues. I want it so badly to be over.  But every day I find a new joy in this journey, and our cups runneth over with the blessings brought forth by God and others. Thank you to all of you who walk by our sides. This journey feels so long, but we are comforted knowing that we are not braving it alone.

Another wonderful week.

 We enjoyed a bit of time at Moreton Park before the heat became too intense. We spent a relaxing day at home before heading to Casey for the fireworks. They were spectacular.

Davis had blood work and a metabolic panel done on Thursday. All of his counts were in normal range for the chemo he is receiving. The doctors raised his chemo this past month because his ANC (immune system) was getting too strong. Last month his ANC was over 3000, and this month it was where the docs want it: 1575. 

Annakate is grossed out by the blood draw. She can't look.

Davis will receive a repeat liver and kidney test this week to check his bilirubin, AST, and ALT levels. The levels jumped quite a bit from June to July. The doctors want to make sure that the levels have plateaued and aren't increasing. While they are still in normal limits for a child receiving chemo, they are still being monitored closely. (Side note: the liver and kidney levels can be up to twenty times the upper limit of normal.) The doctors begin to closely monitor kidney and liver levels at five times the upper limit of normal. Davis isn't quite there yet. Davis' AST was 81 (normal limit 10-34) and his ALT was 170 (normal limit 7-56 usually), which was up from 108 the month before. As a mom, I am concerned, but the doctors says there is nothing to worry about yet.

Chemo was a go on Friday. Davis brought a couple of his best buds along this trip. We turned chemo day into a St. Louis birthday party trip.

Drew, Davis, Annakate, and Wade waiting on the doctors

Quick chemo. Davis received Vincristine via port push and then a breathing treatment of Pentamidine to protect him against bacterial and fungal lung infections. 

While we were waiting on the breathing treatment to finish, Kyle and Annakate snuck over to 9West to visit with Cory and his family. Kyle said that Cory was awake and playing when they were there. They enjoyed a nice little visit together. Please keep praying for this amazing family.

Davis has been complaining of leg pain, more specifically ankle pain, for a little over a week now. I assumed it was due to the chemo drug Vincristine because leg joint pain is a side effect. Dr. Schapiro gave him a look over and discovered swelling and tenderness near the ankle. She believes that it is a strain or sprain of some sort, and Davis has been ordered to the RICE (rest, ice, compression, elevation) method for a couple of weeks. We have no idea how he injured himself, and frankly, we are struggling to keep him off of it. He tolerates the ice and doesn't seem to annoyed that he is limping everywhere. He is pretty good to sit for a while unless there is something better to do.

Once chemo was over, the party started. After some hotel swimming and lounging, we went to Davis' favorite restaurant. Kobe's Japanese Hibachi Steakhouse. Umm. Not sure if the boys liked it as much as Davis does, but everyone left full.

Quite a show!

We headed over to an awesome sports complex we were sure the Davis and his friends would love. They played laser tag. They climbed rock walls. They played dodge ball. They ran obstacle courses. Annakate kept up with them every bit of the way. Even though Davis could barely walk at the end of the evening (ankle pain), he didn't complain one time.

Needless to say, everyone slept well.

Krispie Kreme

Davis will be turning eleven in a couple of days, and I thank God for every day that He has given me with him - even the bad ones. On the car ride to St. Louis, Kyle and I were trying to do the math as to when we would be done with chemo.  2015.  Seems like such a long time from now.

Thank you for your continued prayers and positive thoughts.

We will keep you posted. 

Urgent Prayer Request

7/2/2012: 2:34 PM

Prayer Request: Cory (the ten-year-old we roomed with when we were diagnosed) had quite a set back this weekend. Posted from his mother's blog, Cory suffered a stroke, was airlifted to SLCH, and is now undergoing testing. He is now out of ICU, but the family is waiting the uncertainty that lies ahead. Please earnestly pray for Cory. He (and his family) really need their miracle right now.

*********************************************************************************

I feel so guilty recounting our week know how horrible the last few days for Cory's family have been. But I know that the good days are a gift, and I feel so blessed to make use of every day we are given.

This weekend, we went camping and boating at our usual spot. Kyle's family went too, making camping twice as fun.

It was way too hot to cook on an open fire. We used our new pizzazz to cook. I love this little machine. We had kabobs one night, and steak (yes, steak!) the next. 

My brother-in-law took part in the Mayhem race (race with an obstacle course) being held by the park. We stood in strategic locations along the race path to cheer him on. As we were waiting, my nephew went to grab a frog at the edge of the water. Much to the children's surprise and eventually to our entertainment, it was not a frog.  Kyle, along with the people waiting with us, were convinced that it was a water moccasin. To end the discussion, I googled it. Inconclusive. Kinda looked like a moccasin, kinda looked like a dozen other water snakes too. My guess . . .Eastern Milk Snake (even though they aren't really water snakes.) 



We did boat for awhile, but it was far too hot for Davis. We shuffled him to the shore line on the tube, and we played there for a bit. There is only so much you can do on a rocky shoreline, and Davis was done braving the heat early on. He ended hanging out with his Grandpa and Grandma at the camp site. 

Kyle was able to control his motion sickness very well this time. Two Dramamines. He spent the rest of the afternoon and nearly all of the evening and night sleeping. Poor guy.

Annakate is so full of energy. After we returned from boating, she made use of the remainder of day light by riding her bicycle and sliding on the slip-and-slide offered at the park.

Davis's birthday is quickly approaching, and therefore, our diagnosis date anniversary is upon us. It is hard to believe that it had nearly been a year. It some ways, it seems like yesterday, but in most regards, it feels like we have been fighting cancer forever.

Davis will have chemo this Friday. It should be an easy one. A breathing treatment and some chemo pushed into his port. Please pray that all goes as it should. And please pray for Cory.

We thank you a million times over.

We will keep you posted.