Busy, Busy

8/26/2012: 10:44 PM

One word to sum up the week? Exhausted.

Annakate was baptized on Sunday evening. I am so proud of her.

 

School started on Monday for me and Tuesday for the kids. We sure haven't found our routine yet. I can never remember a time where starting school and shelling corn fell in the same week. I think the kids and I are feeling the effects of school.  Davis told me on Wednesday, "Mom, I think my hemoglobin is low." At first, I thought that comment was kind of funny, but then I was a bit sad. I was sad because what eleven-year-old relates the tired feeling to hemoglobin levels? I was sad because he could have been right; he has been a bit pale of as late.

First day of school

We received our first phone call from school on Friday. Davis has had a cough for some time (hopefully allergies), and was running a tiny, tiny fever. He has had a fever (not a worrisome fever; it's runs around 99.5 or so) on and off for a couple of weeks. We have talked to the oncologist, and he feels that it is a result of sinus/allergies/virus. Since the fever remains under 100.4, the oncologist said that his immune system is taking care of "it". Whatever "it" is.

Friday night, Davis and Annakate ran the Ashmore 1.5 mile evening fun run. The night race kicks off our Ashmore Day Festivities in our little village. I was really worried about Davis running this race because he still has very little muscle mass and tires easily. As fifteen minutes had passed, nearly every child had crossed the finish line. I noticed there were still two kids without times. Davis, of course, and his friend Drew. It took Davis nearly 24 minutes to round the corner by the finish line, and Drew was right there next to him. You know, I think God puts people in our lives for a reason. I really don't think that Davis would have been able to fight cancer so gracefully if he didn't have such amazing friends (and their families) who encourage him and accept him unconditionally. They have never once treated him differently because of cancer. Although not surprised, I was completely moved that Drew wouldn't think twice about forfeiting a race to keep Davis company.

 

Saturday morning . . .Parade! We were fortunate to be chosen as Grand Marshals to represent our little community. It was so much fun! The kids tossed candy at the crowd. They enjoyed that much more than gathering it.

Although he didn't place, Davis gave it all he had during the kiddie tractor pull. I am pretty sure this may be his last tractor pull. He's too big for the tractor!

 

Our church celebrated its annual "Friends Day" today. It is quite a happening, and we look forward to it every year.  Davis managed to make his way into the dunking booth. He was so tickled and excited . . . and so wet! I think he was dunked well over fifty times.  Annakate had some wet fun of her own on the water slide. And no, I don't have any pictures of her, because she was here, there, and everywhere. I couldn't get her to stand in one spot long enough.

 

 

 

Davis and I ended our Friends Day festivities early to head back to Charleston for Davis' piano recital. He played the theme from Star Wars and a song from High School Musical. I thought he did an outstanding job. He did mess up a few times, but he kept going. After he sat back down next to me, he buried his head into my arm and whispered, "I'm so embarrassed. I kept messing up." I think he's a bit hard on himself. I was very proud of him (and a bit jealous of his talent). 

 

 

Davis and I will head down to St. Louis early Friday morning for a long day of chemo. He will have a spinal this time in addition to his regular chemo and side effects meds. Once again, I ask that you pray for him. The anesthesia throws him off.  I will also be praying for a strong immune system. His persistent cough and elevated temperature could have eaten away at his ANC (immune system count). If his ANC is too low, chemo will be postponed, which prolongs everything.

 

Please pray for Annakate too. She has never been able to properly breath through her nose. That has caused a load of trouble for her. She has been on medication for it ever since I can remember, and it never seems to improve. We finally took her to a specialist. She will be having an adenoidectomy and a nasal turbinate resection in a couple of weeks. She's super nervous about it. Anesthesia and hospitals and bloody noses have never been a part of her personal world - always Davis' - and she is a bit scared. The procedure is pretty quick and mostly painless. Hopefully, she will feel much better soon. 

I know it may seem like I am always saying this, but it is true. We are so blessed. As cliche as it may sound, every day is a gift. I am astonished as to how far we have come in the last thirteen months. We had some really rough times and gobs of bad days. And even though the bitter bites of those experiences are as vivid as living them the first time, the simple beauty of life -- the days where cancer doesn't dictate our lives -- outshines them.

We will keep you posted.

School . . . Ready or Not!

8/17/2012: 7:17 PM

I love when spontaneity works out. Last Tuesday, we received some free tickets to a Cards game. We headed down to St. Louis to soak up a game before school started. It was wonderful. The seats were great, the temperatures were mild, and we treated ourselves to nachos and Dippin' Dots.

Thank you, Mike and FS, for the tickets!

My aunt was married last weekend. I am not sure how your families work, but with my family being spread out all over the country, the only real times everyone gathers together is for weddings and funerals. Obviously, weddings being preferred. The wedding was beautiful, and the fellowship with family and friends was even better.

My aunt danced with her groom for their first dance.
Davis got the second dance.

I met with Davis' teachers, the school nurse, and principal this past week. The meeting went well, and I feel better about returning to work. Davis' immune system is stronger than last year, but he is still at risk for infections. My fear is that since he looks so well and healthy and feels pretty good most of the time, others will forget that he is still taking daily and monthly chemo and that his immune system is still compromised. This might lead to more risk taking: kids not washing hands often, carelessness in covering noses and mouths when sneezing or coughing, parents sending kids who are "a little" sick to school. The teachers and nurse are going to help keep an eye on this to limit Davis' exposure to germs.

The next two weeks will prove to be an adjustment for us. I have started back to work (teacher) a couple of days ago, and the kids start school on Tuesday. Davis will ride a bus to and from school for the first time. He will have a locker with a lock (quite a challenge for him), and he will be responsible for taking his own temperature with a thermometer kept in his locker when he feels ill.  Kyle will be harvesting in a matter of days - a month earlier than normal. I think we all had forgotten about my balancing act of job and home, because we are out of groceries and there is a growing pile of laundry already. I am so thankful (and so blessed) that Kyle is an amazing team player and picks up where I left off. He has hauled the kids around all week and even did the grocery shopping this evening.

I pray this school year is uneventful. I pray the germs off of Davis for each day of the next school year. I pray that he continues to respond to the chemo. No hiccups on this journey, no fevers, no hospitalizations. God is good; I have no doubt.

We will keep you posted.

Ducks in a Row

8/6/2012:

Where is the time going?

Davis came home from DC with a sinus infection. Since his fever never spiked over 100.4 and since he was already on a broad spectrum antibiotic, we did nothing in terms of seeking special medical attention. I know it sounds crazy, but sometimes I miss having a child with a normal sickness. Well, I don't know how to really say it. As inconvenient and miserable a common illness makes a child (cold, flu, etc), you know that it will run its course and your concerns are minimal -- hydration, fever, possible antibiotics, etc. There is far more worry when your baby has a really compromised immune system.

Started Taekwondo this week.
No sparring, of course.

Davis headed into the new SBLHS lab on Wednesday evening. Wow. It is really nice. His monthly counts were taken.  On Thursday afternoon after Davis had attended the fair, we were notified by SLCH that Davis was neutropenic. His ANC (immune system count) was 495, a far cry from the 1500 we want to maintain. The nurse told me that he dip was probably stemming from the sinus infection coupled with the daily chemo. The daily chemo beats the body down slowly, and Davis' body learns to adapt to it and rebuilds. As his body (immune system) continues to gain strength, the chemo will be increased to allow it to build more. I visualize a weightlifter. The weight is placed at a limit that the lifter can barely do, but manage. Over time, the lifter gains strength and the weight is not a challenge, so the weight is increased, and the process continues. When the immune system takes a hit (sickness), it drops. The nurse had us hold the chemo for Thursday evening in an effort to give his body a break.

We headed down to chemo on Friday. Davis' port was accessed and another CBC was done to see if his counts were trending upwards. If his counts were continuing to drop, his chemo was going to be adjusted. If his counts were increasing, the doctors would know that his body was on the mend, and chemo would resume as scheduled. It takes well over an hour to get the results for a CBC, so there is quite a bit of waiting around involved. We busied ourselves with doctor visits and a breathing treatment. We even managed to play two or three games of Life on the ipad.

The smell of the alcohol they clean his port with
makes him sick. He always covers his nose with
his shirt and holds his breath.

The CBC revealed an ANC of over 800.  An answer to prayers. Davis' body was mending itself. Because of the bounce in ANC and his small increase in weight (now nearly 73 pounds), Davis' oral chemo was increased. As he continues to grow, the amount of his chemo will too.

The pentamidine breathing treatment is so strong that it is
administered in a special room and the nurse and I have to wear
these plastic industrial-strength masks. I would be lying if I said that
it doesn't bother me that I am protected from this med while Davis'
lungs are being filled with it for twenty minutes straight.

A nearly two hour wait for medication at the pharmacy placed us home Friday evening. Even though the day was long, it was good.

We are balancing the beginning of a routine while trying to use up every bit of summer. The kids and I have been getting up a bit early each day - a practice run for when school starts. The kids have also started eating cereal - the breakfast staple when school starts. I registered the kids for school yesterday, which truly makes summer feel over. I miss it already. I know that we crammed a ton into this summer to make up for last summer, and I think we all loved it. No one here is ready for it to end.

God has truly blessed us, and I am continually grateful for His hand on Davis. We have been through so much in the last year. This might be admission of a lack in faith, but I couldn't have ever imagined that Davis would be looking and feeling as well as he is this time last year. I am already praying for an uneventful year in terms of cancer's ups and downs. I don't ever wish away days now (each day is a precious gift and my children are growing up far too fast), but I am excited to celebrate Davis' year two milestone.

We will keep you posted.