3/29/2012: 9:30 AM

The trip down to Children's was pretty ordinary. There is more road construction on the route - something I didn't think was possible. The road construction, the drive-thru lunch stops, and the noon traffic in the city caused us to be ten minutes late.  And boy, the clinic was busy, but it didn't take Kathy, Davis' nurse, long to get him accessed and rolling. The transfusion itself takes a few hours, so we just sat around. Davis played his DS and Ipad, and I read. At 5:00 pm, he was de-accessed, and we headed home. Pretty uneventful.

The best news of the trip is that Davis has gained five pounds! He now weights 63.8 pounds. Fifteen more and we have hit his target weight. I would have to say that Prednisone, Arby's curly fries, hidden protein powder, and prayer seem to make a pretty good weight-gaining combination. I also asked about Davis' liver function. His liver levels are elevated. His ALT/SGPT was a whopping 103, when normal limits are between 5-35. The nurse practitioner Davis sees said it is not a concern, and levels have to be much higher to bring forth any real alarm. I still worry about the long term effects all of this chemo is having on his body, specifically his liver.

Davis refused to take his medication last night. I tried all of my parent tricks: bribing, sweet-talking, compromising, grounding, yelling. . . . nothing worked. Luckily, not soon after I had checked out (picked up a book and tuned out the world), Kyle came home and worked some of his magic. Davis did take his chemotherapy meds before he finally went to sleep. I am ready to look back on these times and say to Davis, "Remember when you used to fight taking your medicines. . . You drove us crazy with that." And then we will all give a sorrowful laugh thinking back, and then move on. I pray that day will come, because it terms of taking medication, the last eight months have been anything but joyful.

I know that we have been blessed by the encouragement of positive thinkers and the intercession of prayer warriors, and this is why I am about to ask what I am about to ask.

Shortly after Davis was diagnosed, Davis had an eight-year-old roommate, Cory. He and his family were from Rantoul, and we had a lot in common. We learned that Cory had been fighting rhabdomyosarcoma (basically, cancer of the tissue that causes tumors) six months before we met him. He was in remission, but the chemo was very hard on his little body and caused him to be hospitalized quite a bit. Although Davis wasn't overly friendly, Cory oozed friendliness, full of smiles and questions. He reminds me of the little children you see on the St. Jude's commercials. He is truly the sweetest, most positive, little guy I have met at Children's.

Cory was having some trouble as of late (his counts weren't maintaining), and we received word (via his blog) yesterday that his cancer is back and has spread to his bones. While this isn't ideal, it appears that doctors have a plan to treat the cancer. Cory's family is heartbroken. It seems the nightmare begins again for them. I only tell all of you this so you can send your positive thoughts and prayers to this wonderful family who desperately need them.

It surprises me how much we rejoice and suffer with and for the families we have met who are walking parallel roads with us. Their children are in a way our children - or could be our children - and cancer, something we all hate and blame for uprooting our lives and robbing our children of their childhoods, brings us together. We fight the same battles, and we all have the same fears. That idea alone is why I call on you to pray for Cory and keep him in your thoughts.

A less demanding request . . .please remember Davis and the rest of us in your prayers.

We appreciate your encouragement and support always.

We will keep you posted.

3/27/2012: 10:15 AM

It was quite a fight to get Davis to go to baseball try-outs. He decided he wasn't going to try-out after all because he was too sick and too weak, and kids would make fun of him for being so bad at baseball. I used my mom powers to discern that it wasn't really the sickness or weakness holding him back, it was the fear of being judged by his peers. That lesson right there is the hardest to teach; and I am constantly trying to instill the concept of "whose opinions matter and whose opinions don't" in my children, but it is quite a challenge. So I fudged the truth and told him that if he didn't try out like every other boy, he wouldn't be on a team. I explained to him that if he did not have the want and respect to try out, he didn't deserve to be on a team. Needless to say, he was ten minutes late to try-outs.

He did great. True, he was very weak and very slow, and I think it bothered him quite a bit. I
know that he is frustrated that his best is sub par to what it was a year ago. I can't even imagine how difficult it would be to struggle at something that you knew you could do a year ago. I reassured him that as his muscle and strength comes back, his endurance will improve, and over time, he will adjust to the feel of his chest guard, and his confidence will be restored. I hope he believes me.

Davis was feeling quite lethargic over the weekend. He told me he had been having some headaches and dizziness.  This could be caused by three obvious issues. He could have a virus. I believe that this is unlikely because Davis has had no fever or any other symptoms. He believes he could have low hemoglobin. I doubt this because his counts are supposed to be stabilizing, and his last CBC nearly two weeks ago revealed that his hemoglobin was over 10, which is good for Davis and his type of cancer. I believe that it is his Hypoglycemia, which is caused by his chemotherapy. Davis doesn't particularly enjoy sugary goodies. He doesn't eat candy or chew gum. He is sick of juice boxes and has to be forced to eat fruit. My guess is that his blood sugar is low. We went to Sarah Bush yesterday to get some blood work done to get an idea of what is going on. We haven't heard from the clinic yet today, but I will keep you posted.

Davis visited the ER to see two of his favorite people.

Ok'ed by the doctor, Davis has decided to start getting peripheral
sticks for his counts. It saves a ton of time.

We had some company last night. Donna Tammen, my grandmother's best friend, brought Davis a care package from her son, Brad, and his team, the Nashville Sounds. There were baseball goodies galore!  Davis and Annakate loved the gifts. Thanks to Donna, a cancer survivor, Brad, and the Nashville Sounds for the baseball care package!

We are still adjusting to the new routine of fewer visits to St. Louis. We are grateful for the support and encouragement we continue to receive eight months into this journey.

PS. The nurse from clinic called. Davis was right; I was wrong. Davis' hemoglobin is very low, and we will be traveling to St. Louis tomorrow for a blood transfusion. (Now I kinda feel horrible for pushing him at try-outs on Saturday.) Hopefully, the lethargy, headaches, and dizziness will cease. Please pray for a safe trip.

We will keep you posted.

Went to Hawaii on Thursday . . . .

3/24/2012: 10:05 AM

An amazing week.

My sister Amy told me about this website, Goalforit.com, that creates an online chore and behavior chart for each child in the family. I can assign the chores and behaviors a point value and when the child reaches a certain amount of points, he/she can cash it in for prizes that I have assigned. So far, so good. Davis' chore chart includes being thankful (no complaining), being respectful, and taking his medication on time without complaint. Annakate's chore chart includes no yelling, picking up after herself, and practicing the piano (something she is not a fan of). Of course, there are other chores as well. Needless to say, we haven't had the medication fight with Davis this week. I hope this is the start of something new and permanent.

There was quite a surprise waiting for Davis at school on Thursday. While he was in the hospital and on spring break, his teachers and the parents of both Miss Goodchild's and Mrs. Meyer's classes organized a day in Hawaii for Davis. Since he was unable to attend his Make-A-Wish vacation because of a hospital stay, they brought Hawaii to him.

The room was abundantly decorated. There was even a banquet table for food set up on the north side of the room. There were palm trees, fish nets, flowers, tiki torches, shells, leis; all the things you would imagine seeing in Hawaii. Some of Davis' classmates were even wearing Hawaiian shirts. When Davis walked into the classroom, he didn't get it. He had no idea what to make of it. Mrs. Meyer explained to him that his classmates' parents worked really hard to bring Hawaii to him since he was unable to go. He was speechless.

At lunch time, Mrs. Meyer's class and Miss. Goodchild's class filled the classroom for a feast. The kids munched on pizza, Hawaiian rolls, pineapple, grapes, strawberries, and cookies. The kids even had treat bags full of goodies too.  A big thank you to Papa John's for giving the classes a substantial discount on pizzas.

The feast ended with a presentation from Mikayla Kuznicki on behalf of her family. To my understanding, the Kuznicki family has a friend who is native to Hawaii. I believe she made two authentic leis for Davis. The leis are beautiful. Davis is very careful with them. He takes them out of the box, shows them off, and puts them right back up. I think he is afraid they are going to be broken.

I know that there were a lot of families involved in making this day so special for Davis and for the rest of the classes. I wish those of you who are not familiar with the children Davis goes to school with could see how these children have bonded and become a little fifth grade family of sorts.  I feel like Davis (and we) have a support group like no other. A heart-felt thank you to the Simmons family, the Schutzbach family, the Kuznicki family, the Holly family, the Cox family, the Williamson family, the Hendrix family, the Ebinger family, the Cline family, the Gandolfi family, and the countless others who helped or offered. The families of Davis' classmates raise the bar on generosity, support, and kindness; and we are forever grateful.

After Thursday, Friday was pretty anti-climatic, but it was Friday, so that was a plus. Davis has baseball try-outs today. I am a nervous wreck. I am worried that he is going to be injured or too weak to do much of anything. I don't know if he is even strong enough to hold up his bat for consecutive pitches. His whole body hurts every night and morning; we assume that he is building muscle again. He is worried that he is going to make a fool of himself in front of all of his friends. I assured him that they understand that being sick has taken a lot out of him, but he is convinced otherwise. I will let you know how it goes. The doctor did tell us that stepping back into "normal" life is difficult and scary. I guess this is what he meant.

Medically, we don't get blood counts again until Thursday. I am eager to see how he is doing. He seems great, so no worries here. We still appreciate and need your positive thoughts and prayers. This battle isn't over yet.

We will keep you posted.

More Normal Than Not

3/21/2012: 5:35 PM

We enjoyed what was left of the kids' spring break by spending most of it with family. Kyle's aunt Tricia was visiting from Georgia, and Grandma Hawkins had a birthday. We spent some time on Friday and Saturday with our Hawkins family, and Sunday afternoon, we celebrated another birthday as my niece turned 3.

Kyle and Kennedy playing with the bubble wand.

Davis and Annakate are doing a pretty good job of finding a routine of school and chores. We had a pretty good routine until Davis wound up in the hospital. It is still a struggle for Davis to take his medication; there are nights when he doesn't go to be until 10:45 PM because he won't/can't take his medication. And of course, that makes for a rough morning, where he has to repeat the process. 

His medicine causes a bit of a conundrum. The predisone he is on causes him to be hungry all of the time. He eats from the minute he gets up until the moment before he has to brush his teeth before bed. One of his chemo meds, 6 MP, has to be taken on a completely empty stomach. Kyle and I have been putting Davis to bed, and then waking him up two hours later to take his 6 MP. It's unusual, but it's working. Davis is still groggy from being asleep, so he doesn't resist taking it as much. And being asleep, he isn't super hungry from the prednisone.

I know I blog it all of the time, but we are so moved by the love and generosity shown to us by friends and family. During spring break, Macy, a little gal who is in band with Davis, took her trumpet and her big heart and played songs for people. They, in turn, tipped her. She took the tip money that she raised and gave it to Davis. Wow. We were so touched by this child's thoughtfulness. I am not sure if she reads the blog, but if so, thank you, Macy!

Thank goodness the weather has been cooperating! She rides every day.

Davis has been feeling pretty good the last few days. He has some major allergies, but who doesn't? He has been playing outside quite a bit, and therefore, he is coated with sunscreen every morning. Chemo and sun exposure do not mix. We have had our fair share of emotional and behavioral issues with Davis as of late (50-80% of children with cancer suffer from depression or issues with compliance), but we are confident that with the help of his psychologist, our united front, and lots and lots of prayer, we will be beyond them soon.

I am sorry that I don't have any counts or medical news to report. It seems odd to me to not know more about Davis' health. This part of meeting the maintenance phase is going to be quite an adjustment for me. We are supposed to get a CBC and CMP next Thursday. However, no medical news is a blessing in and of itself. It means that we are inching our way closer to being done with cancer treatment.

We continue to pray for a complete healing for Davis. When I tuck him in every night, I personally pray over him right then and there. I pray for complete healing, a strong bone marrow, no relapse. I pray for his heart, liver, and kidneys that they stay strong. I pray for his mind and those battles that he fights that we can't see. I pray that he is a witness for God and a leader in the world. I pray that he may see the blessings brought forth by cancer. And I pray that God builds a hedge of protection around him and keeps him safe for all of the days of his long, long life.

We will keep you posted.

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.

Slow and Steady Wins the Race

3/3/2012: 7:20 PM

Our day is just getting started. Davis and I watched a couple of family movies never heard of last night on hulu, and he finally closed his eyes around 2:00 AM. Between staying up late and being pumped full of Benadryl, he didn't get up today until noon.

He has spent the majority of the day in bed. His lovely nurse unhooked his tubing and tower at 6 PM, and he is free to roam about the floor with a mask on until 8 PM.  It is amazing how free one feels when he/she is not lugging a tower full of machines around. We went on a ten-minute walk, and then Davis grew tired. He is back in bed.

Free from tower! Free from tubing! A two-hour break.

Goofing around in the elevator on our ten-minute walk.

His counts today revealed some improvements. His ANC has climbed to 30!  It's not the triple digits that we are needing, but hey, you have to start somewhere. His monocytes dropped from 7 to 2, so chances of seeing a huge jump in ANC are slim, but we have God on our side, so anything is possible.

I weighed some of the positives and negatives of being here nearly a week. I think I will share.

Random photo #1: Davis looking for tape.

On the weekends, everyone clears out and there are very few people here.
Perks: You don't have to wait long for a ride in the elevator.You don't have to wait in long lines in the cafeteria.
Drawbacks: The skywalk bridges from building to building are closed, and you have to walk outside and around a bunch of stuff to get from building to building. Private playroom time is closed. The gift shop, the shopping mecca of this place, closes early.

Our room with a view.
Perks: We are on the B side, so we have a couch. Pick up takes five minutes, and we have a housekeeper. Plus, Davis hasn't been pestered by his little sister.
Drawbacks: Technically, we have a half a room and the window is a bit drafty. Roommates  . . .we have been blessed with some good ones, but it seems as soon as we grow accustomed to one, he leaves and we have to start all over with a new one.

Random Photo #2: Davis just sitting in bed.

Sleep.
Perks: We can sleep whenever we want and for as long as we want.
Drawbacks: There is nonstop traffic in and out of the room. Oh, and roommates don't share our schedule. Plus, we pretty much sleep fully clothed the entire time. Yes, my sleep clothes and my day clothes are mostly the same.

Food.
Perks: We don't have to cook for ourselves, and we have dibs on one-sixteenths of a fridge.
Drawbacks: I can only handle so many grilled cheese sandwiches and french fries. We eat out of sheer boredom.

Disconnect from the world.
Perks: We have no idea what is going on out there in the real world.
Drawbacks: We have no idea what is going on out there in the real world. A couple of days ago, I was walking outside in my flip-flops in beautiful 70 degree sunny weather. Today, I was walking outside in my flip-flops in beautiful 41 degree sunny weather! Totally didn't see that one coming. Lesson learned: never determine your attire on the basis of what it looks like from your window view.

Showers, baths, and the like . . .
Perks: For Davis (and me, I suppose), showering is optional. So is hair combing and teeth brushing.

The shower in the bathroom that I share with all parents
and grandparents on ninth floor (and some from seventh floor too). This
photo gives it justice it doesn't deserve. Reminds me of camping.

Drawbacks: Besides smelling, Davis still needs my help bathing because of his port access and tubing, and that has to be a bit embarrassing for a ten-year-old boy. And I can wait in a line for a long time for a nice, hot shower three floors down, or take my chances in the parent lounge bathroom. I'm not really complaining; the conditions are the best they can be for a hospital.

We want Davis to be good and healthy when we leave, so we don't mind the wait. Another case of the end justifying the means. We pray that his counts recover steady and strong. God bless you all for your positive thoughts and prayers. They mean so much to us.

And although we are in good spirits, there are so many children here who desperately need prayer. There are several children on this floor whose parents, for whatever reason, cannot be with them. I see them sit in their rooms all day and all night with no company. The nurses do a great job compensating for the parental absence, but it's not the same. My heart is breaking for one of Davis' roommate. His father has Shingles, which can be deadly to immuno-compromised children, so he isn't allowed to visit. The roommate tried to call his mom this morning, but she hasn't returned his phone call as far as I know. He can't go home because of his father's Shingles, so he will be here until his father gets better or until his mother agrees that he can stay at her house. The young man doesn't seem to upset about his predicament, but I am. Sad, huh. I just feel so blessed to be able to watch over Davis day and night and keep him company. Please pray for the sick children - the children you have never met - who need to be healed from cancer.

We will keep you posted.

A Whole Lot of Nothing Going On

3/2/2012: 7:14 PM

Yep. Still here. Not much of any change to report. Davis' ANC (immune system) is still zero. His platelets have dropped a bit too. He did have a four point increase in monocytes, so I am hoping that is a sign that his ANC is on the way up. A floor doctor told Kyle this morning that she has had patients that were in the hospitals for four weeks waiting on counts to build. Praying that is not the case here.

Just took this picture.

Kyle brought Annakate down last night. Despite having the worst of Fifth's behind her, she was not allowed on ninth floor. She is no longer contagious to healthy children, but no one was taking any chances with immunocompromised children. Kyle booked Annakate and me a hotel room, and he stayed here while we enjoyed a little girl time. I had not seen my baby since Sunday, so I was all too excited to be hanging out with her again.

The plan for the two of us was to sleep in and get a little shopping done. Despite having a pretty good sense of direction, I have an attachment to my TomTom for city driving, and it didn't make the trip. Well, instead of shopping, we spent the morning trying new routes to get to Children's.  I was pretty lost. Annakate served as the navigator piping directions from Kyle on my cell phone. When we finally made it back to Children's, we decided to walk to lunch and piddle around outside.

I took Annakate's picture in front of every cluster of blooming flowers we saw.
I think we both have spring fever.

Kyle and Annakate headed home this afternoon.  I miss them so much already.

We have a new room yet again. We are finally on a B side (a side with a window and a couch).  Yay! I slept three nights in a chair that shifts into a bed of sorts, so I am very thankful to be on a couch tonight.

New view.

Too funny. The nurse went into the bathroom, the door shut, and the
lock jammed. She was trapped. Several nurses came by to try to open the door, and
several nurses came by to laugh. Finally, maintenance was called, and she was freed.
The door no longer locks.

Davis has been finding ways to pass the time. Playroom time, one hour a day, is what he enjoys most. Kris, a ninth floor life specialist, is a big help and does little things to make him feel special.

Other than that, there is not much going on.  We will watch another movie tonight. I think Star Wars is what he picked out, and we will wait for counts to build.

We are praying for higher counts and a healthy son. We thank you for doing the same. Davis will remain on antibiotics until his counts recover. They are fighting any potential infection in his body for him now.

A picture of Davis and Wally taken yesterday.

A picture of Davis and Nelle taken seven months ago.
Davis has changed so much - and so little - in such a short amount of time.
Same beautiful smile.

We will keep you posted.