Welcome Summer Vacation

5/25/2012:  9:30 AM

I am sure that you have guessed from the lack of posts that things around here have been busy. My OHS seniors graduated last weekend, Kyle spent four days in Tennessee golfing with his friends, and summer vacation started for the kids.

Summer vacation came in a fury. We haven't had one relaxing day yet. I don't mind; each day has been incredibly productive, and everyone sleeps very well at night.

I have been unpacking my new classroom in the new OHS this week.
Annakate and Davis found a new use for my cabinets. They helped some
and played a lot more. I have glitter all over my floor to prove it.

Sadly, Davis quit baseball. I am very disappointed - not that he no longer wanted to play, but that he quit. I am very "old school" when it comes to commitment, I guess. Anyway, he had a list of a hundred reasons, and most sounded quite like excuses to me. A couple of reasons were pretty relevant: chemo causes an intolerance to heat and sun. He wilts in the heat. And playing baseball is pretty hot and one's almost always in the sun. The bottom line is that his heart wasn't in it, and it was torture for everyone to make him finish the season.

Eliminating baseball has freed up our schedule a bit. Annakate still has her commitments: various ball camps and Taekwondo.

She's officially a yellow belt!

Healthwise, Davis is doing wonderful. He looks great and feels great most of the time. He has energy - something he didn't have this time last year. His appetite has returned, and we are hoping that this summer brings on some muscle and ten more pounds.We don't have to head down to St. Louis for chemo until June, and we love the long stretches of time in between.

More bluegill.

With Davis being prone to infection, we constantly have to monitor him for fevers. What a challenge! With it being so warm outside, he always feels feverish to me, so I am constantly taking his temperature. I am sure he is being so patient with me, just as he is with my camera snapping pictures all of the time. I am sure I will adjust.

Annakate's first bass.

We are looking forward to some family time over the next couple of weeks. Kyle has been working some long hours to free up his schedule some. With farming, there is always something to be done (unless it's February).

The more they fish, the more courage they find. Davis, Annakate, and Parrish
(Annakate's friend) are attempting to remove a hook from a bluegill.

We appreciate all of your love and support  . . . even still. Although Davis is doing so well, we have a constant set of worry and fears that we fight daily. Please remember Davis and our family in your prayers and thoughts. While I am requesting, I ask that you lift up thoughts and prayers for Davis' friend, Cory. He appears to be tolerating the chemo, and his newest tests and scans have came back bearing good news.

We are so truly blessed.

We will keep you posted.

Ten-Year-Old Boy Thing

5/14/2012: 11:43 PM

We ended up getting Davis' CBC on Tuesday. I took him to our local pediatrician's office because he itched all over and had no rash. Apparently, unexplained itching can be a result of a liver malfunction. Since there was no rash and no new allergy explanation, it was important to rule this out. The pediatrician's office and Davis' St. Louis oncology team discussed it over the phone and thought it would be a good idea to go ahead and get a CBC and CMP to see what was going on. The results came back later that day. While his liver levels were high for a normal child, they were acceptable for a child who is pumping chemo into his system on a daily basis. The onc nurse did say that his uric acid levels were high, and the team would discuss it and speak to me about it on Friday. In the meanwhile, Davis was to continue taking allergy pills and use Sarna lotion for the itch.

The itch still continues. The hem/onc doctors don't have any answers and are confident that it has nothing to do with liver or kidney function. The next step is to see a dermatologist.

Davis'  CBC looked great. His counts are relatively high . . .well, higher than we are used to seeing them. His ANC (immune system count) was 2600, and anything over 1500 is considered healthy. Yay!  with this news and the way he has been feeling, Davis has been taking a bit more risk. He is going out in public and attending school with no mask. Davis is far more protective of himself and the doctors and we are (at times), and I know that he continued to wear a mask long after we didn't ask him to anymore. He still continues good hand washing, but I haven't wiped down his school desk and chair in a couple of weeks. Baby steps to normal, I guess.

chemo time with Kathy

Breathing treatment went faster this time.
The deeper the breaths you take, the faster it goes.

Friday's chemo was pretty quick. Davis was accessed and received his Vincristine in record time. We had to wait a bit for the reverse air flow room so Davis could do his breathing treatment. We had quite a wait on his oral chemo and side effects meds at the pharmacy (The pharmacy staff are so kind, but terribly slow, but I bet messing up meds like chemo could be horrific.), so we headed over to The Hill and found a quaint patio restaurant to fill our empty bellies. Davis has been eating uncontrollably lately. I think it is a ten-year-old boy thing. He ordered two entrees and ate my salad. I couldn't help but think that six months earlier we were talking about a feeding tube.

Entree #1 at Favasso's

In June, Davis will have finished his first of eleven rounds of this chemo phase. This phase is made up of eleven three-months rounds.  So let the count down begin. In June, we can safely say we only have 30 months of chemo left!  It sounds better than saying that we still have 2 1/2 full years of chemo left.

In other news, Annakate was honored at the Children's Art Exhibit at Tarble Art Center on Saturday. We are so proud of her. And Mother's Day was pretty peaceful. I spent the entire day with my babies.

The name of the piece?  Tie Dye Henna

Oh, I nearly forgot. Davis had a band concert on Thursday evening. There was quite a chaotic meltdown thirty minutes before performance time. Davis had misplaced his sticks (he plays percussion). Actually, he had misplaced them several days earlier. He decided thirty minutes before that he needed to find them because as he put it, "I can't play without them. No other sticks fit me." It sounded absurd to me, but I have long given up trying to reason with a near-hysteric child. He had resolved to the idea that if he didn't find the sticks, he couldn't play the concert. After turning the house upside down, coaxing him into the car, looking in his classroom, enlisting the help of the band teacher, rummaging through every drawer in the band room, the sticks were found with minutes to spare. Catastrophe averted. My nerves were shot, but nothing like an amazing band concert to right my flustered thoughts. I am not being biased here when I pass along kudos to Ginger Stanfield for turning those little kids into sheer geniuses with instruments.

Davis playing timpani

This week proves to be a busy one. Ball games. Taekwondo belt testing. Talent shows. School picnics. Retirement luncheon. And of course, my Oakland kids are graduating. We are so thankful and grateful for slow recovery of Davis' health and our old lives. Although the journey continues, I often look back over the last several months and question how we have survived all of this. Well, we know how. . . I have never really hated anything or anyone in my entire life. Truly. But I HATE cancer. I don't hate the blessings and the learning that has come from it, but the cancer itself - I hate it.

See those red sticks?  Those are the ones.
Boy and sticks have been reunited.
All smiles.

I can't remember what my last update on Cory was, and so many of you ask because I know you are thinking of him and praying for him. He underwent a lung biopsy last week. The results aren't back yet. His bone marrow is cancer-free. Yay! He starts some pretty nasty chemo this week, so please pray and pass along a positive thought for him.

We still pray every day against infections, long term side effects, organ damage, secondary cancers, and relapse. I have really picked up the prayers for Davis' safety. Now that his health and energy levels are beginning to return, he is far more rambunctious. He acts like . . . like. . . well, a ten-year-old boy. He hurt himself on the trampoline on Saturday. It looked nasty. His response, "Ahh, I'm just checkin' out my platelets." Bruises are something we can live with. An injury to his port, we cannot. I just ask that God keeps Davis safe, so he can continue being a ten-year-old boy.
We will keep you posted.

Fishing Advice From an 8-Year-Old

5/7/2012: 9:55 AM

We are easing into summer for sure. Davis' Friday night ball game was quite a nail biter. Despite that he struck out three times, he was still pretty happy because he was playing against one of his best buds, Drew.

Davis at bat. Drew catching.

We spent most of the weekend camping. We had a blast. We did a little fishing. Well, I did most of it. I caught nothing. On the bright side, I did feed quite a few fish before I switched to a lure, and then the fish weren't interested. Kyle's sister and family were camping about four or five places down from our camp site, so the kids loved running back and forth.

On Sunday afternoon, we tried our fishing luck at a different pond near the farm. Again, I had no luck. A couple nibbles here and there. Annakate caught her first fish five minutes after casting her rod. She was too cute.  As I helped her reel it in, she was giddy with glee. She told me her fishing secret, "Mom, it worked! I said a little prayer that I would catch a fish, and I caught one!"  We continued with our fishing, and she kept reeling them in. Since they were all bluegill, she was beginning to think she was catching the same fish over and over again. I assured her that they were all different sizes, so surely they were different fish. A half of an hour later, I was still empty handed (I did have to stop and help her quite a bit.) and she mumbles from behind me, "Maybe you should say a prayer." And with that, Davis took my pole over and caught a fish. Hmmm. I was content to see them so thrilled with their catches.  It made for a relaxing afternoon.

Fish #1 of 3

Annakate is extremely afraid of fish. She worked up
some courage to try to take the fish off of the hook herself.
She wasn't able to do it, but kudos to her for trying.

Davis developed a rash last week. It looks like some sort of heat rash or hives. I have been pumping allergies pills into him. I have also done all of the things I know to do . . . watch what he eats in case it's a new developing food allergy, wash all bedding and clothes in mild detergent in hot water, etc. The rash seems to come and go, but the itching is still pretty intense even when there is nothing visible. It could be a side effect of his chemo and the heat or sun, but I think that the chances of that are rare because his chemo dosage is fairly low. I will call the Children's clinic today and see if Davis' team has any better answers or solutions.  I guess the timing couldn't be better. Davis is scheduled for chemo on Friday, and if he can hold off, the doctor can take a look at the rash then.

Davis and his catch

Yep, Davis will go and get his monthly CBC on Thursday, and if all looks well (and it should), we will head down on Friday for chemo. This should be a fairly easy chemo day. Davis will be accessed and have a Vincristine push in his port, and then he will have the nasty breathing treatment. Although Davis would prefer to have us crush the antibiotic to prevent lung infections for him to take twenty-four times a month, we drew the line and insisted that he do the breathing treatment. It saves time and fights over medication. Plus, it's one less medication he has to take every week.

In June, chemo will be a bit more intense. Davis will have an LP (spinal tap) to place more chemo in his spine to protect his central nervous system from cancer.

Update on Cory. . . It appears the latest round of chemo is working. There was no cancer present in his latest preliminary bone marrow biopsy test. The doctors are taking a look at some other things (specifically a lung tumor), but for the most part, his family received good news on Friday. Please keep the positive thoughts and prayers flowing for this little guy and his family.

And always, I ask that you remember Davis and the rest of us in your thoughts and prayers. Davis is looking great and feeling pretty well. We know that your support and God's goodness are responsible. We never forget for one day how truly blessed we are. Never.

We will keep you posted.

Loving that Life Keeps Happening

5/2/2012: 11:13 PM

We had a very pleasant weekend full of family activities. We quasi-camped on Friday night. Basically, we watched a movie and slept in the camper at the farm. The kids still thought it was fun.

Davis in his bunk

Annakate in her bunk

Saturday was a much anticipated day. Annakate competed in her first taekwondo competition. I did my best to disguise the fact that I was a nervous wreck for her sake, but I am pretty transparent. No fear though, she did an amazing job. She took second in her one steps (Yeah, I am not really sure what those are. In my non-taekwondo mind, I equate them to a very abbreviated dance routine.) and claimed first in her form (This is a more lengthy routine.). We couldn't be more proud of her. She really enjoys taekwondo, and I am glad to see her excel in it.

Annakate performing her form for the judges.

There was a tie, so there was a tie breaker re-do. Here the judges are
voting for the first place title. Yay Annakate!

Annakate, her trophies, and her instructor Mr. Snyder

Davis has been attending school on a regular basis, and we have noticed that he has been taking his medication quickly and without complaint for the last couple of weeks. He seems so absorbed in his fifth grade world. He is excited about his upcoming band concert and has hummed every single song to me as a preview of the real thing. He is participating in Miss. Goodchild's (his reading and English teacher) book club, and often we have to force him to shut off the book light and go to bed, because he can't seem to put his book down.

I love that life keeps happening. At times, life feels more like the "old normal" than the "new normal". I couldn't even imagine this two or three months ago. I was updating the calendar this morning and it hit me. I was planning - planning days, weeks, months ahead of time. I can't really explain it, but when Davis was diagnosed, the calendar was wiped clean. And for the seven months that followed diagnosis, the only permanent plans that were made were doctors' appointments and transfusions and spinal taps and blood draws. Cancer dictated everything in our lives. And although we knew we were working towards an end goal and many assured us things would get better, the idea was too abstract. All of our energy was devoted to living in the now and to facing the immediate. So to see the calendar covered in ball games and orthodontist appointments and vacations was beautiful to me.

We thought our kitty, Jerry, had broken his leg. He was limping pretty
badly on Tuesday. A trip to the vet revealed some major tenderness in his elbow
and an abscess in his forearm. Thank goodness, nothing major for this old barn cat.
Annakate and Davis take turns giving him his antiobiotics and pain medication.

Davis seems to be working on his behavior. We have noticed fewer disagreements at home. Kyle and I have made a big effort to make sure that Davis gets a consistent amount of sleep. We think that his lack of sleep as the week wears on has a considerable impact on his behavior and emotions. Kyle has also started prepping Davis as to the behavior we expect before Davis has a chance to be difficult. For example, Davis didn't feel well this afternoon. He had a baseball game early evening and then we had church. Despite leaving a little early from church, Davis didn't make it to bed (shower, reading, supper, etc) until nearly 9:30 PM. Kyle reminded Davis several times throughout the evening that he is expected to get up in a pleasant mood and eat a good breakfast in the morning. Hopefully, by placing the expectations out there and giving Davis time to adjust and accept them, we will thwart any misbehavior. I know that it seems elementary and unnecessary at best for most ten-year-olds, but Davis isn't most ten-year-olds. We have to re-program him for living a life where cancer and its side effects aren't center stage any more.

Holding at second base.

I know I convey it all of the time, but we are truly thankful for your prayers and support. You have been so faithful in standing by our sides. We ask that you still continue to lift up positive thoughts and prayers on Davis' behalf. I don't want to develop a false sense of security just because Davis is looking better and feeling better. There are still the risks for relapse, port infections, and serious illness (such as pneumonia).  We still pray against the short term (hypoglycemia, mouth sores, nerve pain) and long term (secondary cancers, organ damage) side effects. I refuse to let fear rule me, but I would be lying if I didn't admit that I carry a much larger load of fear and worry than I ever have in my life, and I think I always will.

An update on Cory. Thanks to all who have been thinking and praying for Davis' friend. I am so moved to hear how many of you have taken on praying for Cory like you have been praying for Davis. It worked. Cory, who was so homesick, was able to go home with an ANC of 0 (not something very common on the west wing of the 9th floor at Children's). He has a series of tests on Friday. I am sure that the family would love, love, love prayers and positive thoughts going out on that day.

We will keep you posted.