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.

I've Been Missing Home

4/29/2012: 11:15 AM

While Davis was in the hospital at the beginning of March, he composed a song with a wonderful music therapist, Tracy. I have finally figured the only way to get the song on the blog was to make a video. I used the pictures I took while he was in the hospital for the near two weeks. Davis had a great deal of fun creating this song. With Tracy's help, he wrote the lyrics and composed the music using computer programs designed to feed together the instruments, tempos, and key changes that Davis imposed. It was quite a treat for him.

Inconvenienced by Cancer

4/26/2012:  10:20 AM


I am sorry that I haven't updated sooner. My internet has been out for the last several days.
Last week was rough. Despite no real hiccups in his treatment, Davis' behavioral/emotional issues dominated our every day life. I was/am seriously at my breaking point with his mood swings and back talk. I am sure that some of it is normal kid stuff, but Davis was never a child to misbehave in any sort of way (Annakate is a bit of a different story.), so I am adjusting to new circumstances and experiences as a parent.  Kyle believes that since Davis and I have extremely similar personalities and neither of us have any give, the emotions run high. Kyle has done a good job this week of being the communicative liaison, and things have been improving slowly.

Now that treatment has slowed a bit, I can better understand the emotional toll that cancer has taken on Davis. He is starting to feel better, but he is irritable at the inconveniences cancer is causing him. He has taken to wearing his port protector underneath his baseball t-shirt so it isn't as noticeable. You can't even tell he is wearing it really; he looks bulky as though he has been lifting weights. I said to him last night, "Hey, have you been working out?" The problem with the port protector is that he can't run with his arms to his sides. He has to run with his elbows and arms out, which slows him down considerably. I know that he says he doesn't mind boating with us this summer, but I am sure he isn't going to enjoy it as he should. He can't get into the water for risk of a port infection, and he can't be exposed to the sun for long stretches because of the skin sensitivity caused by cancer. These are just a couple of examples from a long list. Bottom line: boy and cancer don't mix. We aren't complaining, truly. I know how blessed we are, and Davis doing all that he is doing is miraculous on many different levels, but I think as a family, knowing how well he is feeling physically, we want cancer behind us.


Speaking of emotional toll . . . Davis, my nephew Shane, and I were eating in Buffalo Wild Wings on Sunday. A boy a little older than Davis was being seated and walked by our table. The boy undoubtedly noticed Davis' hair or lack of and his mask and made a great effort to turn around, stop right in front of Davis, and give the "what's wrong with you, you freak?" look to Davis. He then just turned around and walked away. As he did, Davis looked at the back of his head and said, "What?" and then put his hand in the crook of his elbow on the table and cried. At first, I thought he and Davis knew each other and they were going to talk, but once I realized what was going on, I was stuck in the aftermath. Even though I know that child was completely ignorant and possibly unknowingly rude, I wanted to unload a great deal of hostility on him and his grandmother. As a mom, I wish I could do a better job to shelter my child from the endless stares and whispers. There is so much that cancer has taken from Davis already; I just want to preserve his privacy and pride, and I can't. Anyway, I chose the moral high road and explained to Davis that sadly there are people like that in the world. I told him, "His problems are bigger than yours, and you reap what you sew." Davis soon regained his composure, but that memory has been seared into my mind. I was able to see how fragile Davis' emotions are, and how helpless I am at times. I am not sure if this encounter affected us because we are exhausted and drained from facing and fighting all of the layers of cancer or if it is because we live in a community, we attend a church, and Davis attends a school where he is loved and accepted and not treated differently, because sometimes we forget that he is a child with cancer. Maybe it's both.


Annakate was sick over the weekend. Kyle and I took her to the ER on Saturday evening. Yep, strep throat. Davis went to stay with my in-laws because the ER nurse practitioner recommended 48 hours of distance. Annakate was feeling much better by Monday morning. Kyle watched Annakate on Sunday morning while Davis and I attended church. When we made it home, Annakate had a surprise for me. Two new fish! Yippee! (That is my sarcasm in case you couldn't read it.) You see, this is what happens when daddy and daughter spend sick time together. :) Needless to say, the guppy Lein (pronounced lee - in) (a Japanese guppy, perhaps?) and the algae eater Jolly are nice additions to our family.

Friday night . . . fever

Saturday night . . . ER

Kyle took Davis to church Sunday evening and I stayed home with Annakate. Kyle and Davis went to Wal-Mart. Well, Davis was doing some kind of karate sword-fighting moves on Kyle, Kyle dodged an attack from Davis, Davis ended with his foot in some kind of crate. . . . Alright, Davis injured his ankle. You see, this is what happens when daddy and son spend unsupervised Wal-Mart time together. :) Tuesday, I had to take Davis to get an x-ray to make sure nothing was broken.  Good news! Just a sprain.

Davis and Dr. Leifheit

Things are picking up around here. Annakate keeps busy with soccer and Taekwondo, and Davis had his first baseball game last night. At times, I thought we would never get to this hustle and bustle again, and here we are. It is a welcomed change of pace, but we are still adjusting to it.

Annakate doing what soccer players do . . . running and kicking.

Davis guarding third.

We want to thank the anonymous saint (maybe from the Rantoul area) for the card of encouragement and the gift. The kids were overjoyed, and Kyle and I were equally grateful. The kids had a blast using their sleuthing skills to try to decipher the handwriting on the card and any overlooked clues. No such luck. God bless you!

Thanks to everyone for standing beside us as we continue on this journey. We ask that you pray not only for Davis' health (no relapses, no long term side effects, no secondary cancers, no organ damage) but for his emotional well-being as well. Carrying the stress of cancer as a ten-year-old is not an easy feat, and I sadly fear that cancer will leave scars that we cannot see. We have only been able to do so well for so long because of the prayers, positive thoughts, and encouragement that have been sent our way. The weight of our burden seems far lighter because so many of you have shared in the load.

Please earnestly pray for Davis' friend Cory. He continues to receive treatment and waits for counts to build in the hospital at Children's. He wants nothing more than to be healed and to go home.

We will keep you posted.

Rough Week, Best Friday

4/13/2012: 11:00 PM

We found out on Thursday that Davis counts look great. His ANC (immune system) is over 1800 (Healthy kids run over 1500)! All of his other counts are better than they have been in a long time.  The phone call from clinic also brought some better news. Davis was not scheduled to get a lumbar puncture (spinal tap) as originally planned. Apparently, the LP on the roadmap is for low-risk ALL patients. Davis is high-risk ALL and received cranial radiation, which exempts him from this LP. Davis was more than thrilled to hear this news.

Doesn't he look good? He gained four more pounds. He
now weighs 66.7 pounds. Hard to believe that he was
nearly fifteen pounds lighter a couple of months ago.

So chemo today was fairly easy. Davis was accessed, given a chemo push of Vincristine, and de-accessed. The whole chemo process took less than five minutes. He did receive a new treatment as well. He opted to try a breathing treatment of a mixture of Albuteral and Pentamidine to protect his lungs from bacterial infections and pneumonia. He has been taking Septra, an antibiotic, twice daily three times a week. Since he still fights, stalls, or drags out medication time, we thought the breathing treatment might be a better option. Plus, the Septra can lower Davis' counts, whereas the Pentamidine does not. The drawbacks? The breathing treatment has to be done in one specific room that has special ventelation, and the Pentamidine smells and tastes horrific. Davis had his mask scented and he sucked on a ring pop to help diffuse the taste and smell. He had to stop the treatment a couple of times to blow his nose and wipe away the drool caused by the ring pop. The nurse, my mother-in-law, and I had to wear heavy masks to protect us from the Pentamidine, which was too potent for us to breath. After thirty minutes, the treatment was over, and Davis concluded that the Septra wasn't so bad after all. I hope a month of Septra-free living changes his mind. Thirty minutes of torture seems a better deal than swallowing down a chalky, crushed antibiotic twenty-four times a month, but the decision will be his to make.

Albuteral treatment

Pentamidine treatment

We finished in clinic around 1:00 PM and headed down to the cafeteria. To our surprise, the St. Louis Children's Choir (3rd through 6th graders) were singing. Oh, did Davis love this! He downed his hot dog and listened to the kids sing.

We had waited around at the hospital because Cory was selling ice cream at 1:30 PM in the abandoned nurses' station on 9th floor. Cory, his dad, and the life specialist, had created some cleverly named ice cream concoctions and were dishing them out for fifty cents a serving. You can't beat that! Cory's ice cream stand was a smashing success. Nearly all of the doctors and nurses showed up, and a handful of patients and parents did as well. Cory has an unbelievably tender heart. When asked, he said he was going to donate half of his earnings to Child Life and the other half to research.

Davis and Cory
The best part of our Friday.

Please continue to pray for Cory and his family. My heart aches for them. I can't say that our journeys are even comparable any more, but I feel a protective attachment to the 9th floor children and the families that have crossed our paths. We lift Cory up in prayer each and every day simply because he needs it. God can heal him, and we provide the faith.

Please remember Davis in prayer and positive thoughts as well. He has been struggling with some behavioral issues as of late. Despite the help of a psychologist and some low-grade medication, he still fights for control at home (common in children with cancer). While his behavior (talking back, not doing chores, etc) might be tolerated in some homes, it isn't in ours, which has lead to quite a bit of stress lately. My prayer is that this behavior subsides. I hope that as his life resembles his old "normal" life so will his personality and behavior. Honestly, I think dealing with the cancer is much easier than dealing with the behavioral issues that accompany it.

Well, we are finally in the thick of the maintenance phase. If all goes as planned, Davis won't receive another CBC until May 10th, and won't have chemo again until May 11.

Thank you for your continued support and encouragement. We draw our strength from it.

We will keep you posted.