Stubborn

7/14/2011:  8:33 AM

We all possess certain characteristics and traits - good and bad - that make us who we are. Davis is very stubborn to word it mildly. (Kyle believes that this is a trait he has inherited from me, and oddly, I can't disagree.) We know that we are relying on Davis's stubbornness to fight the cancer.  We weren't expecting the stubbornness to aid in his personal battle against taking medicines.  I tell you, this kid hates taking medicine. It is an ordeal every time he has to take it. The nurses and doctors reassure us that he will become so used to it, he won't think much about it.  I hope that is true. And if so, we could really use a fastforward button.

reading "fan mail": thanks for the
birthday cards and well wishes!

We are constantly teetering the fine line of food and medication. Davis's tummy hurts nearly all of the time now. We have figured out that we need to space each medication out by thirty minutes.  The reason being is that if he gets sick and can't keep it down, he only has to repeat doses of the medication he took in the last thirty minutes.  So at times it seems like he is taking medicine for hours. Some medicines require food and for others, it doesn't matter, so we are figuring out how to time meals with certain medications. This part alone feels like a full time job right now.

Nights are rough. Last night, Davis was unable to keep some medication down and had to repeat some medication and his shower. (He actually told me to tell everyone in the blog that he puked, but I said the word puke grosses people out. ;-) ). Needless to say, he was exhausted and grouchy. We are so thankful that he sleeps well, as he is in constant need of energy.  Today, Davis will receive a red blood cell transfusion because his hemoglobin dropped to 7.0. He was super excited when he heard that. It would be like one of us drinking a couple of energy drinks; it gives him that much energy, and the buzz lasts for a couple of days. We don't have the official CBC print out, but the doctor did say that he had no blasts (cancer cells) present in his blood today, and his ANC count (immune system) was 1275.  Even though that is low for a healthy child, it is really high for a child on day 6 of chemo. The doctors tell us often that Davis is doing better than most kids.



breakfast: more ramen noodles.  he eats them for
every meal. no tabasco sauce on these!



Tomorrow is a big day. He will receive all of his chemo. He will also receive a bone marrow biopsy and spinal tap. We would appreciate prayer for these procedures and treatments, because they are not easy nor are they fun. We are still praying for remission in 24 days, is it? We will know if he is heading that direction after the bone marrow biopsy tomorrow.

Our faith continues to be the source of our strength, and it seems that God provides what we need even when we don't know we need it. Our God is an awesome and mighty God, and He proves that to us daily.

Keep you posted.

The Ominous Hair Talk

7/13/2011:  4:47 PM



feeling sick and tired

Simply understated: awful last night and morning. The docs have been adjusting Davis's medications.  One of the chemo meds is causing Davis to have severe jaw pain.  The side effect causes nerve inflammation and irritation.  There are times that Davis can't chew or talk. He has been taking pain medication every four hours to help out until the medicine that treats that side effect starts working. The chemo is starting to upset Davis's stomach.  He rarely wants to eat, but he has to eat to keep the medicine down. It is a vicious cycle. While the doctors are letting the chemo work, they are managing the symptoms of the side effects.  Davis will be taking 8-10 different medications and chemo at home and will come once a week to the clinic to get his IV chemo.



sis. lisa, davis, pastor shine



The Hair Talk . . . Davis loves his hair. He has always fought haircuts.  He loves his hair so much that he even packed a squirt bottle, so he could wet down and style his hair every day. So naturally, we were dreading the hair talk.  Kyle had hoped to conquer the hair talk at home.  He was going to let Davis shave his head before Davis had his head shaved or have a head shaving party as our church has done in the past. Davis is a very smart young man, and we were sure that he had already figured it out. Today, the nurse was talking to Davis's roommate about hair loss. Davis asked Kyle if he (Davis) would lose his hair. Kyle assured him he would probably lose his hair.  Davis responded, "Well, I could lose a little in the back, but I want the front to stay like this. I like my bangs." I wanted to laugh and cry at the same time. If only chemo patients could pick and choose where they lost their hair and how much they lost. God timed our visitors perfectly, because our ministers, Pastor Shine and Sister Lisa, walked in as did Davis's child life specialist, Lauren. (Child life specialists are people who explain terminology in kid terms.  They are educator-types who look after the psychological well-being of the child.) We reassured Davis that he would be allowed to wear hats and caps almost always, and he was ok with it. Whew!  We are amazed at how well that went. 



We skyped for the first time this morning. Grandma Marylee helped the cousins skype and Great Grandma Coffey even visited with Davis for a few minutes. We hope to skype other family members when Davis feels up to it.

uncle terry, aunt bev, and christina
stopped in for a visit

Home . . . As of now, we are at track to go home on Friday.  Davis will have a bone marrow biopsy and aspiration to check the chemo progress and a spinal tap to place more chemo in his spinal fluid.  He will also get his IV chemo treatments (the nastier ones).  If all goes well (and we are praying and believing that it will) and he does not develop a fever, we will be released.  We will still come back once a week or more for treatments and transfusions, but we will be sleeping in our own beds again. It will take some time to adjust to the "new" normal. We will be going fewer places, scanning visitors carefully, watching diets and food intake, and monitoring Davis non-stop, but these are super small inconveniences working towards a much bigger and more important goal - a healthy son.

We continue to love and appreciate the support and prayers.  The texts, FB messages, blog posts, phone calls, cards, visits have been uplifting and are valued.  We are still counting the days until remission knowing the medicine will work and God will provide.  We still need the prayers for healing and strength.  This the hardest thing we have ever faced, and we often wonder how families do this without the support of family, friends, church family, community, and without faith in God.  We are eternally grateful for what we have.

Keep you posted.

Annakate is Going to be Jealous . . .

7/12/2011:  6:45 PM

This morning was awesome.  Davis's dear friends, Gage, Wade, and Drew, and their families, the Goughs, Straders, and Shraders came for a visit.  Davis has been looking forward to this for a couple of days now.  I had a little fear that the boys might be apprehensive around Davis because of the mask and IV tower; once again, I was wrong.  It didn't phase them. And for awhile, it felt as though we were sitting in the living room at home visiting with our friends while our children played. I think we all (Davis, Kyle, and I) really needed that. (My camera died, so I have only one picture.)



The families showered Davis with presents, and among them was an IPAD!  Apparently, Amanda Cox and Krissta Newby had an idea and organized the purchase of an ipad for Davis. (Krissta and Amanda - thank you!!!) We can not begin to thank all of the families and Ashmore teachers and staff who pitched in for this purchase.  It was a great idea, and we are very grateful. Annakate is in disbelief.  When she found out, she said, "Mom, when you ground him, will you ground him from his ipad for a month, so I can play with it?"  I tell you, her little gears are always turning!  I spent the greater part of the afternoon figuring out how to put everything he wants on it.  Angry Birds kept him busy for awhile. 



the ds is ancient history



The day continued to go downhill.  Davis was given a liquid medication to cut back on mouth sores caused by the chemo.  Unfortunately, it made him sick to his stomach.  He feels horrible, and now he won't eat.  One of his chemo meds causes nerve pain in his jaws.  He struggles to talk and chew.  The nurse just gave him a pain killer (which he absolutely hates) to dull the nerve pain so he can eat.  He can't take the Predisone without food in his belly.  Kyle just made him some ramen noodles.  Those seem to be doing the trick.  The doctor just changed the mouth sore medication prescription to something he may better tolerate. Ughh.

 

feeling puny



His numbers continue to drop, and they will.  His ANC (immune system) was 2002 today.  For perspective, healthy kids are above 1500, and his was 3003 two days ago.  Today was the last day that we will venture off of the floor, and we find ourselves spending more and more time in the room.  He will be monitored carefully for fever (infection), blood pressure (increased salt intake caused by Prednisone), and blood levels (red cell and platelet transfusions) to get him ready for home. We are truly impressed on how tough Davis has been through all of this. Many grown-ups would have struggled to do what he has done this past week.

We continue to appreciate all of the support that is being sent our way.  We love the prayers and positive thoughts.  We ask that you continue to pray specifically for remission in 25 days.  We also ask that you pray for tolerance of side effects from chemo.  It is a truly helpless and horrible feeling to watch your child suffer and not be able to "fix" it.  We offer him comfort and encouragement, but it does not take away the pain. 

Psalms 62:5 states, "My soul, wait thou only upon God; for my expectation is from him"  We remind ourselves daily that we have put our son in the hands of these fantastic doctors and God. We continue to be so appreciative of all the saints interceding of Davis's behalf. May God richly bless you.

Not sure if there will be a movie marathon tonight.  Davis said he wasn't up to it.  Maybe the pain medicine will kick in.  I think "Indiana Jones" and "Harry and the Hendersons" are on the program for tonight.

Keep you posted.

Killing Time

7/11/2011:  7:30 PM

I blogged last night that we had a great day (which we did) and no sooner than I finished blogging last night, Davis had another homesick spell.  It breaks our hearts.  We want nothing more than to take him home, but we want him home when he is healthy enough to be there.

davis expressing his love
for broccoli

We watched Beetlejuice last night.  Since it was approaching midnight, I wouldn't let Davis start another movie, but he was content to watch WipeOut on Hulu. 

His blood levels today continued to drop.  His healthy white blood cells are critical, his platelets dropped as did his ANC, but both in healthy norms at this point.  He had 4 blasts (cancer cells) present today, which was up from yesterday's 2.  It will take a while to get the cancer out of his marrow.  We know that his counts and levels will continue to drop as the chemo progresses, and it is a good sign when his numbers drop because that means the chemo is working.  Nevertheless, it bothers me to think that my otherwise healthy son is inching his way closer to harder times.  It is hard to adopt the concept that one must get much sicker to get better. 

how davis really feels
about broccoli

Today, Davis received an IM.  Basically, that is chemo that is injected into the leg muscles.  The nurses were kind enough to numb his skin before simultaniously giving him injections in both legs. Unfortunately, nothing could be done for the stinging and burning once the medicine was pushed in.  But boy, he was a trooper.  I am not sure he even shed a tear.

Poor Davis. The Prednisone has increased his appetite; however, the chemo has started working and now nothing tastes right or good.  We keep putting a variety of foods in front of him; sometimes he eats, most of the time he doesn't. This is very frustrating to him - and to us.

We had some more visitors today.  The day seemed to fly by. The Walters family stopped by, and Davis's counts were still high enough that we were able to go down to the Edison Room (a side room by the cafeteria) for a ten minute visit. It was short but very sweet.  Uncle Randy came and kept us company.  Mick and Marcia Cox stopped in too. And Tia, a friend from church, and her friend, Lindsey came for a visit too.  We are so thankful for all of our visitors as it passes the time.

We have been reading all of the posts and Facebook messages to Davis.  He just smiles.  He can't believe how many people are still thinking about him.  His buddies text him, and that perks him up a bit too. And the cards . . . Davis has had a ton of mail.  I know several of you have requested a mailing address:  1 Children's Place, Rm #917B, St. Louis, MO.  I have no idea on zip code. It took him a good long time to read mail from his "fan club" today. You are all so wonderful to keep the continued positive thoughts coming our way.

We have increased the time we are spending in his room in an effort to protect Davis from germs. It seems like we went from a-little-dirt-is-good-for-you and five-second-rule parents to germaphobes.  Well, not really, but we are acutely aware of germs and sanitation now.  Kyle even joked today that the 10' X 10' plastic bubble room would be set up when we got home. 

davis and nurse brittany

The doctors and nursing staff here are fantastic.  Davis has even formed attachments to a couple.  His day nurse last week comforted him through a lot of scary things, and it doesn't hurt that she is really pretty.  His weekend night nurse was awesome too.  Well, he was a guy, he colored Davis a cool birthday poster, and he rarely let Davis's IV machine beep.  (IV towers beep all of the time it seems.  They usually sound alarms when there is air in the line, when fluids/meds are running low, or when the battery is low.)

lego monster

Davis's DS has been his best friend lately.  Yesterday, he received a fairly large Star Wars lego kit to put together. Kyle and I were sure that it would take the remainder of the week to put that 592 piece monster together.  We were wrong.  He started it last night and finished it up this afternoon. It is quite impressive.

Tomorrow should be another day of killing time and watching numbers.  No real treatments (other than maintenance and Prednisone) are expected.  He will have a blood transfusion if his hemoglobin dips below 7.  (Today it was 7.2.)  Blood transfusions sound scary, but they are given out like candy to leukemia patients.

Well, we started watching "How To Eat Fried Worms", but Davis thought it was terrible, so it looks like we are watching "Pirates:  Dead Man Chest".  We have been blessed with popcorn galore for movie marathons; we have even popped bags for our roommate.  Looking forward to a peaceful night sleep.

We want to continue to ask for prayers for remission in 26 days or so. Davis will also need strength for the really rough days ahead.  We are praying for good counts with minimal sickness.  We have also started praying against long term effects of the chemo medication because the list of potential issues is very long.

We love and continue to rely on the support of our family, friends, community, and church. My Oakland family (bosses, teachers, parents, students) has also been a pillar of strength to us as well. Our relationship with God is stronger than ever, and we are believing for our healing.  We believe God has a special plan for Davis; therefore, He has His hand on our son. 

We will keep you posted.

Birthday Boy Feeling 10 Already

7/10/2100:  5:35 PM

What a great day.  Davis's doctor decided against the transfusion which kept treatment/maintenance low key today.  The only meds that Davis has to take today are the anti-nausea meds and Prednisone, so Davis is feeling great.

hard to blow out candles
through a mask

We had a ton of visitors.  It was awesome.  Grandparents, aunts, uncles, cousins, and friends flowed in and out all day.  It was so nice to be surrounded by them. Grandpa and Grandma Fanello made arrangements with the hospital and organized a birthday party in a private room in the cafeteria.  This allowed Davis to see and play with all of his cousins. We had cake, ice cream cake, and pop.  Davis has been abundantly blessed with gifts and well wishes.  Since there is no real system of organization set up here, thank you notes will be a challenge, so I am sorry in advance for that. Davis received many cool gifts that will keep him busy in the weeks to come.



prayer blanket



Periodically throughout the day, I have been reading Davis well wishes that people have sent him for his birthday and health.  His nurse was in taking vitals and was asking who all the people were wishing him happy birthday.  The ones I had been reading him at that time were mostly from church family, and he responded to his nurse, "Those are from my church people.  I am kinda famous at my church."  He totally cracks me up.

Speaking of church . . .

Davis's Sunday school class created a special prayer blanket for him.  Sis. Dee, one of his Sunday school teachers, sewed him a blanket in his favorite colors, his friends and teachers signed it, and then they prayed on/over it.  They also made a picture album. Our church is filled with such amazing children who love the Lord . . and Davis. Davis misses church and is looking forward to Water Sunday next week if he is able and well enough to go.

Davis is already acting like a typical ten-year-old.  He was getting ready to go downstairs for his party when the nurse gave his dad a pediatric mask for Davis to wear.  It had little animals on it.  He looked at me and said, "Mom, I can't wear that. That is totally for babies."  So he had to wear an adult mask.  You will notice in the pictures that it swallows up his face, but I guess it was better than the "baby" one. 



davis and annakate



Annakate adjusts well to hospital life.  She is a breath of fresh air.  Today she walked in all dressed up. We all got a kick out of it. She has befriended Davis's oncologists and refers to one of the doctors as Dr. Samuel (his first name) because his last name is hard to pronounce.  Seeing Davis with his tower, port, mask, etc. doesn't phase her.  She acts as if it is completely normal, and we love that about her.  And boy, we miss her so much.

Tonight, we plan on taking it easy.  If we can get Davis off the DS long enough (He received a new game.), we hope to take him down to the garden on the 8th floor before his shower and movie marathon.  He received 7 or 8 new movies, and that should pass the night time for the next couple of days.

Treatment (chemo) will pick up again tomorrow.  Please pray for strength and for remission in  27 or so days.  Despite the circumstances, Davis had a great tenth birthday, and we thank God for him.  We know we are so very truly blessed.

Keep you posted.

Morning Birthday Blues

7/10/2011:  8:33 AM

Well, Davis is officially 10!  It is unreal for me to believe that ten years ago, I was laying in the hospital bed holding my baby, and I woke up doing the same. 

Davis was a little tearful when he realized that we forgot "special plate".  Kyle and I painted a dinner plate the summer we were first married.  Every birthday - and only on the birthday - it is used for birthday breakfast.  It is just another tradition we have in our family.  Much to our dismay, we have forgotten special plate. Kyle explained to Davis that he can eat on special plate when he gets home, but Davis is not a rule-breaker and refuses.  It saddened him to think he has to wait a whole year to eat on special plate.

Just talked to the nurse.  The numbers are looking good. His ANC (the immune system) is over 3000 as of today.  His blasts (cancer cells) have dropped from 9 to 2.  Eventually, eveything will be wiped out:  his white blood cells, red blood cells, platelets, etc, and everything will be restored.  He is responding to chemo. Thank you, Jesus.

We just found out that Davis's hemoglobin dropped to 7.8 from 8.4 over the last couple of days, so he will have a blood transfusion today.  We like blood transfusions because they give Davis an abundance of energy, and he's going to need it today.

We are looking forward to a whole day of celebrating!

Keep praying!

Keep you posted.

Turning Out To Be A Pretty Good Day

7/9/2011:  8:08 PM

We finally received the results for the spinal tap.  Davis underwent a spinal tap to see if the cancer had spread into his spine and to place chemo in his spinal fluid. Praise God!  Davis had no cancer in his spinal fluid.  And if that isn't enough good news for one day . . .

davis and his buddy

Doctors pay careful attention to something they call ANC (more specifically, neutraphils for you medically-minded people), which amounts to basically the immune system.  Healthy children run a count over 1500; Davis's count as of this morning is 2535.  This helps our odds for going home sooner than later.  With that being said, we are very aware that Davis's ANC will be wiped out by the chemo, but we are happy knowing that he will be starting chemo healthy and strong.



We had so many family and friends come and visit today.  There were aunts and uncles, friends, and family members - enough to keep us occupied all day. We loved it.  We can't believe how the day flew by.  Davis's dear friend Harrison came for a visit with his parents.  Since Harrison is unable to come up to the floor, the doctor allowed Davis to go down and visit him. Visiting with Harrison perked Davis up considerably.  And to see them talk and play almost made the situation and atmosphere seem non-existent. 



davis and coach king



One of the biggest surprises of the day was when Coach King walked in.  Wow!  What a surprise.  Davis's baseball team went to great efforts to get together and make Davis's birthday special.  Coach King brought Davis gifts from the team:  a team picture titled "Team Davis", a baseball that the boys and coaches signed, birthday cards, and an awesome baseball lamp in which the coaches, parents, and boys signed the shade. We are overwhelmed at the lengths our friends go to in order to bring encouragement and pieces of home here. We are very touched to know that the same people who cheered on our son as he was running bases and up to bat are still cheering for him in the challenges ahead.  And this gesture is just more proof of the wonderful young men being raised by outstanding parents in our community.  Thank you!

Well, movie marathon has started.  I am missing "Diary of a Wimpy Kid" courtesy of Sis. Becky.  Davis forced me to watch Pokemon last night, so I think I will be more vocal about the movie selections tonight. :)  Davis still battles the homesickness.  He doesn't complain or cry as much, but you can tell what he is thinking as night draws near.  The nursing staff tells him that this place will feel like home in time, but I agree with Davis that it never will.  We are hoping that if all goes well (no fevers, tolerance to meds, etc), we will come home next weekend. 

Health wise, Davis is feeling ok.  He didn't eat much today and has had some dizziness, discomfort, and upset stomach.  He tries to be brave and never asks for pain medicine.  We are hoping with all of the activity today that he will sleep peacefully tonight. 

We continue to ask for prayer for Davis's health.  We pray that there are no complications that could impede his chemo.  We are praying specifically for remission in 29 days.  We serve a healing God, and we know God hears our prayers, so we will keep praying our specific prayers and praising Him for everything He has done for us thus far. 

And saying "thank you" seems so understated to all of you have prayed for us, brought us food and gifts, visited us, and sent positive thoughts our way.  It will take us an eternity to repay your kindness.  We do not take your love and support for granted, and we are so very thankful and consider ourselves so very blessed. 

Hope you all have a good evening. 

We will keep you posted.