St. Louis Channel 5 News Story

3/18/2012: 9:48 PM

While Davis was inpatient at Children's, he had an opportunity to be interviewed by Heidi Glaus, a reporter from the KSDK news station. She was doing a piece promoting Camp Rainbow, an organization that does wonderful things for the children with cancer.

You can see Davis and his little friend Allie in the news story. Just click on the link below.

http://www.ksdk.com/news/local/story.aspx?storyid=310369

Thursday, We Did Not Have Cancer

3/17/2012:   4:50 PM

Happy St. Patrick's Day! 

I am not sure when I blogged last, so I will catch you up on the last couple of days.

Thursday morning, Davis and I headed in for blood work. Davis' blood was so thick, that it was clotting before Valerie, our wonderful phlebotomist, had a chance to finish. We finally decided to do a peripheral stick in his arm to save time and multiple finger sticks. We then headed out to pick up his buddies.

Davis had had these three best buddies since kindergarten. They all have such different personalities and interests, but they complement one another fantastically. They listen to one another, bounce ideas off each other, and help one another without thought. They are truly kindred spirits. And I think that Davis is at his best, both emotionally and physically, when his friends are around. It is truly like the cancer melts away . . . as though it never really existed. What a blessing these boys and their families have been to us. They haven't shied away at learning and adjusting to our new normal, and I am grateful. Last week when Davis was in the hospital, one of the boys texted Davis, "How are your counts?" I couldn't help smiling at that oddity from one ten-year-old to another.

So Thursday, the boys started with a two-on-two Nerf gun war, and eventually we headed to the farm for fishing and go-kart/4-wheeler/golf cart driving/riding. Hands down, it was one of the best days we have had in a long time.

Friday morning was bound for disaster when I neglected (because I forgot) to get Davis up at 5 AM to eat a little something. He was scheduled for a spinal tap at 1:30 PM and wasn't allowed to eat anything after 5:30 AM because of the anesthesia. When I got him up at 8:00 AM, it was too late. It was a miserable ride down to St. Louis filled with his complaints and bad attitude and my resolve to completely ignore him, which just seemed to fuel his growing fire. He finally gave up and fell asleep at Troy, which was not soon enough but always my luck. Once in clinic, he was fine, and the chemo and spinal went well. 

Davis had severe nausea on the way home. I am sure the combo of anesthesia
and chemo was to blame.

Dr. Bednarski, one of Davis' oncologists, explained that starting the maintenance phase is the third scariest time for families. Diagnosis is the first, and end of treatment is the second. Until now, we have been dependent of Davis' weekly counts. They determine if he needs transfusions and the strength of his immune system. In the maintenance phase, Davis will only get a CBC once a month. I asked the doctor how we will know what his counts are and how strong is immune system is, and he replied, "You won't". I wanted to cry. I am not a risk-taker and I am a bit of a control freak (even though cancer is curing a lot of this in me), so you can imagine why I was beside myself with this news. Apparently, Davis' counts are to be returning within normal limits (except ANC) within six months time. His ANC will still fluctuate given the chemo and viral/bacterial infections that he picks up. He will still be hospitalized for any fevers/low counts.

Other changes that come with the maintenance phase is the resuming of normal activities and oral meds. The doctor wants Davis to consume protein powder and do some endurance building activities to start building his muscle mass for baseball. Davis is also to be held accountable for former responsibilities (chores that he couldn't do because they were too germy or used chemicals). Davis has three new oral chemo medications he takes at home. His daily medications went from three to six, and that doesn't include his "as needed" medication that he takes for pain and/or nausea. Plus, the medications are tricky. Some are taken on an empty stomach, some on a full, some refrigerated, some on certain days of the week. There sure are a gazillion ways to mess this up.

Random picture. Annakate is now an orange belt.

We aren't expected to go back to St. Louis until April. Hopefully, no issues will arise between now and then.

We continue to pray for us. This new phase is already proving to be quite an adjustment. We will never be able to really thank all of you who have lifted us up in prayer and positive thoughts over the last eight months, but please know that we are forever grateful for you. My heart breaks for those who must make this journey alone.

We will keep you posted.

Our New Addition

3/14/2012: 9:11 AM

Davis was released from the hospital on Friday afternoon. He received platelets and blood before we left. Uncle Randy, who was visiting us that day, drove us home. Annakate had her taekwondo belt ceremony that evening, so Kyle attended that while Davis and I enjoyed home. Yes, Annakate is officially an orange belt now, and she really seems to enjoy taekwondo immensely.

The pre-medication for platelet transfusions makes him sleep.

When we finally reached home, Davis and I were greeted by the newest member of our family: Linus Swindol Coffey. (Yes, all of our pets have middle names.) Davis really wanted a dog for Christmas, and it took us a while to find one. Davis was willing to wait for his Christmas present, and he was finally able to hold his "gift" on Friday night. I think we had all forgotten what having a puppy around is like. We, especially Annakate and Davis, are adjusting to the nips of the razor sharp teeth. Annakate can't understand why Linus chases her every time she tries to get away from him. This puppy is smaller than our cat, and Annakate still cries, "Mom, get him away from me. He's going to get me."

Davis and Linus

Lucy, our 3-year-old Doberman, gets alongs well with Linus. She mothers
him quite a bit. And no, Davis wasn't thinking Charlie Brown when he named his dog.

We spent a couple of days visiting my family down in Tennessee.  It was a nice getaway. With Davis' ANC being so low, we can't really stay in a hotel (germs) and we are avoiding public places, so visiting Grandpa and Grandma Fanello was a great solution to our need to get away.

We will be enjoying what is left of spring break here at home. We couldn't be more pleased with the weather. I have so many projects that I am ready to do; I don't know where to start. Davis will go to SBLHC tomorrow for blood work. The results will determine if his counts are high enough to start his maintenance chemo. His ANC (immune system) has to be 750, and his platelets have to be 75 in order to start. If his counts are there, Davis and I will head down to Children's on Friday for chemo and a spinal.

Please pray for Davis. I fear that although the maintenance phase is easier for most children, it will be harder for Davis. In maintenance, Davis will only have to go to Children's once or twice a month for IV chemo in his port. The rest of the chemo (including steroids) will be taken orally every day. Davis still struggles taking oral medications. Although we have been at this eight months now, he still fights us nearly daily on taking oral medication. Plus, all meds are still crushed or liquid because he can't swallow pills yet. He will be taking medication daily for the next 2 1/2 years and maybe longer. I know it will be quite an adjustment for him here at the beginning, and I pray that over time it becomes second nature for him to down his medications.

We still pray the same prayers we always have. Total healing, Strength for the journey. We thank you for doing the same.

We will keep you posted.

Heading Home

3/9/2012: 10:40 AM

I am giddy. The nurse came in this morning and told me that we would be going home today. The doctors confirmed that statement about twenty minutes later. Davis was removed from the antibiotics this morning, and he will be given products (that is what they are called in cancerland: packed red blood cells and platelets) before he can be discharged. Davis has to be pre-medicated for the platelets, so he is zonked. He has no idea that he gets to go home today.

Davis is holding up powder art. You peel numbered stickers and
shade the area with colored powder.

I don't know all of Davis' counts yet, but I do know his ANC (immune system) is 135. This is a far cry from the 500 we were wanting, but the doctors are pretty sure that Davis is trending up. I am hoping that he is over 500 in a few days.

Yesterday afternoon, Phillip, a volunteer at the hospital, stopped in to play Davis a song on his violin. This young man is quite talented. He can play any song that he has heard. He plays a lot of contemporary top 40 songs. Davis asked him to play "A Whole New World" from Aladdin. It was flawless. Phillip plays violin for the kids; he is actually studying to be a doctor.

Talented Phillip playing us a song

We just had a great visit with Kyle and Annakate last night. Davis made Annakate bacon in the microwave. We played in the playroom. We ate ice cream. We wrestled. The kids played on the computer. It felt like home. Annakate cried terribly when it was time to leave. I think I could physically feel my heart breaking when she was clinging to me. I worry about how Davis' illness is affecting her. Cancer has victimized her too. We will be reunited tonight. Far too long to be separated from one another.

More Wii

Projects galore

Yes, Kyle was super tired.

Hopefully, Davis' counts will spring up quickly. He is scheduled to have chemo and an LP (lumbar puncture/spinal tap) a week from today if his counts have recovered. The doctors have postponed his Septra (a medication he takes to prevent bacterial pneumonia) because it can suppress counts. He will restart his Septra when his counts are strong again. Although we have no idea what caused the fever that landed us in the hospital a couple of weeks ago, we are thankful that God had His hand on Davis, and he is getting better. Just one tiny bump in the road on this long journey.

Thank you for your support. We continue to appreciate it and need it.

We will keep you posted.

It's About Time!

3/8/2012: 12:11 PM

Well, we have officially tied our hospital stay record. When Davis was diagnosed, he was admitted for eleven days. On this go-around, today makes day 11.

Yesterday sailed by pretty quickly. My in-laws, Gary and Marylee, came over for a visit. They played Bingo with Davis here in the room, and they played Wii with him during his scheduled private playroom time. We even went out to the garden some. Going to the garden is a rarity when Davis stays here. He never wants to go; I think it reminds him too much of home. At least that is what he has told me. It must be the outside of it all, because it's not like we have anything quite as beautiful as the garden with its unusual trees, stepping stones, and koi ponds at our house.

Davis still struggles with homesickness.  His friends text or call him occasionally, and that helps quite a bit. (Thank you, Drew and Wade!!) I think he feels a real disconnect from school. Spring Break couldn't have come at a better time. It starts next week for Davis. We can use Spring Break to get him strong and well, and then he can start back with the rest of the kids after break.

Yesterday, the doctors ordered a test to test Davis' IgG levels. I am not going to pretend I know much about this. Apparently, chemotherapy can wipe out one's immunoglobulin supply. If one's immunoglobulin supply is low, the activity in the bone marrow is suppressed, meaning the counts don't recover. The doctors can give a person IVIG therapy, basically a partial synthetical IgG transfusion, to help raise one's levels. Luckily, Davis' IgG test came back within normal limits. This could mean that Davis' low counts have been caused by a virus/bacteria infection. We may never know.

I haven't received a print-out of Davis' counts today, but I do know that his ANC (immune system) was 33 yesterday and is 70 today. The Fellow on call said he expects a couple of good jumps over the next couple days. You know what that means?  That means we are heading home in a couple of days! Davis has be in the triple digits and trending upwards agressively. The doctors also plan on transfusing him over the next couple of days. It appears now that Davis will only need hemoglobin, because his platelets jumped dramatically overnight.

An organization called Camp Rainbow is holding a camp-in on the ninth floor. Basically, it is a bunch of crafts and projects the kids can do to pass the time. Davis was interviewed by the Channel 5 news reporter concerning the Camp Rainbow camp-in, and the news feature is due to air on Monday or Tuesday. I will be sure to attach a link to the story when the story airs.

Channel 5 News Interview

We have met some wonderful children (and families) this week who have needs much greater than Davis'. I don't think I ever valued a smile on a child's face or the sound of laughter so much as I have in the time I have spent on 9 West. Joy finds its way into this little corner of misfortune. Please pray for the children battling cancer and send up positive thoughts in their honor.

Our prayer requests are always the same. We ask that God heals our son completely and forever.

We will keep you posted.

The Rollercoaster ANC Ride

3/6/2012: 12:30 PM

We had such a good time yesterday. Davis had an abundance of energy and was quite entertaining. Kyle brightened our day by making crafts with Davis and hanging out with us for private play time.

Desperate for a sword.

Kyle's creative craftiness at work.

Our weekend roommate, a 17-year-old, went home around 2:00 PM, and by 5:00 PM, we had a new roommate, a 9-year-old.

Donkey Kong Wii mania.

Last night, Davis was given some Lorazepam to help with some nausea and headache issues. Lorazepam always makes Davis a little weepy, so the medicine combined with some understandable homesickness made Davis cry for over an hour. He cried for his dad; he cried for Annakate. I knew when he kept mumbling, "Mom, I miss Annakate so much" that he was really homesick. So I did what I think all mothers would do. I snuggled him and held him, and pulled up the show Wipeout on hulu, and soon the tears turned to laughter. After he was settled, we watched Power Rangers (the movie). Well, I feel asleep (one of God's kind blessings because the movie was that bad) and he finished the movie.

Today, we have company. Davis has a nurse, a student nurse, a tech, and a student tech. There is a lot of activity between the four people watching over him. Tracie, a music therapist from the Maryville University "Kids Rock Cancer" organization stopped in and worked with Davis to write a record an original song. He was in heaven. He loved every minute of it. It was fascinating. I have to figure out a way to attach his song to the blog.

Tracie and Davis composing music.

Good news and bad news. Davis' counts came back lower than yesterday. His hemoglobin and platelets have inched down a bit, but the doctors are still waiting to transfuse. They want his bone marrow to kick in and start working. Plus, since Davis isn't experiencing any side effects of the low counts, there is no need to take action. While his white count has increased from .5 to .9 (healthy kids between 5-10), today he had no neutrophils, so his ANC was 0. The good news?  His monocytes (predictors of ANC jumps) are trending up. Usually the monocytes come up and then the neutrophils come up. His monocytes moved from 9 to 12.

I guess today will be more of the same.

Random photo. Davis and I have discovered that a storage room
is the room with the best view. I don't know why that fact makes me want to both
laugh and cry. You can't tell in the photo, but the Arch is out there. Davis is too cute. He noticed the baby beds.
I said, "Wow. This room sure is warm." He said, "It has to be, Mom. They keep the
babies in here." Did I mention it's a storage room?

Thanks for the thoughts and prayers.

We will keep you posted.

Still Here.

3/5/2012: 11:05 AM

Greetings from St. Louis Children's Hospital.

We are still waiting for the doctors to make their rounds. Well, I am. Davis is still sleeping.

Yesterday, Davis' ANC had dropped from 30 to 20, but we were still optimistic of a climb because ten points in ANC world is nothing. Today, his ANC is 8. . .  Well, I guess it is better than zero. On the brighter side, it appears that his platelets and hemoglobin have leveled off because they are right around where they were yesterday. They are low, but no transfusions have been ordered yet. We are still just hanging out and waiting for his counts to build. The doctors just came in, so in other medical news, the knot on Davis' arm is shrinking. The head doctor examined it today and believes that it is probably a bruise of some sort. The doctors will continue to keep an eye on it until it is completely gone. And Davis has dropped a bit of weight. He now weighs 57 pounds, a far cry from the 70-75 pounds of healthy child his size. The dietitian just visited with us. She told us everything we already know. Davis is to eat high fat foods. Unfortunately, nearly everything he is encouraged to eat, he hates. I wish I would crave the lettuce salad he eats everyday, and he would crave the Mexican food, grilled cheese, and cheeseburgers that I eat everyday.

Davis' grandparents (my mom and stepdad) came for a visit yesterday. Davis had a great deal of energy, so it was nice to have a couple of bodies to help channel it. They surprised us with donuts and picked up some lunch.

It looks like aerobics, but Davis is teaching Grandma and Grandpa
some newly learned Power Ranger moves.

Davis had to have to port de-accessed and re-accessed. A port needle has to be changed every seven days in order to minimize opportunities for infections. Poor guy. The EMLA (numbing cream) they had given him to numb his port site either didn't work or the nurse didn't wait long enough, because he felt the entire needle being pushed in. The nurse and I both told him that it was ok to cry, but he didn't.

Oh, the importance of EMLA cream. Stinks getting a small nail
stuck into your chest when the numbing cream doesn't work.

I am pretty sure that Davis' first round of maintenance chemo will be postponed. He has to have an ANC over 750 and a platelet count of 75 to proceed on Friday. It could still happen, but each day of low counts decreases the chances.

Davis' oncologist, Dr. Schapiro, learned all about the world of Webkinz. Davis
is making it his mission to pass along all of his 10-year-old kid knowledge to her.

The hospital comes alive on Monday morning, and we have already had quite a few medical (doctors, nurses, techs, life specialists) professionals stop in. Davis is looking forward to his private time in the playroom today, and Kyle is on his way. The day is much more exciting when Kyle is around.

Last night, Davis' nurse taught him how to take his own blood pressure
with an old machine hanging in the room.

Thank you so much for keeping us in your thoughts and prayers. They really are such a blessing to us. Please keep them coming. We have a long way to go until Davis is considered cured (five years after last treatment), so we lean heavily upon God and His healing powers, the wisdom of the doctors, and prayer and positive thoughts.

We will keep you posted.