Wednesday, February 29, 2012

Playtime

Today has been a much needed playday.  David and Kyle went to school this morning so Miss Hope and I headed out to storytime at our library.  Today was Dr. Seuss day in honor of his upcoming birthday! 
Here is our fabulous librarian and amazing friend, Tracey.  Not only is she an awesome children's librarian, but she is an amazing Mom and friend.  I could do a whole blog post on her, but here she is dressed as Cat in the Hat for storytime.  It felt so good to do normal Mommy/daughter stuff today and David had another fabulous day at school.
Here is Hope in her "big tutu" watching Horton Hears a Who on the big screen after the books were all read.  Being homebound with David and Hope has been great, but I have missed doing the mommy playgroup thing.  I also got an extra treat of running into my four year old preschool class at the library!  Oh how I have missed their sweet faces:)  They looked huge to me!
Hope coloring her Horton ears! 

Sweet little Sydney Pugh:)  AFter library we went and picked up David from school. We then spontaneously had lunch with two other Mommies and lots of kiddos.  It was pure heaven to catch up with friends and to have a distraction from tomorrow.  I am trying so hard to have faith and not be worried about tomorrow's scan and procedures, but it is hard.  We covet your prayers to not only get through the day, but that the results will show that no new lesions have popped up. The last EKG that we did was traumatic because of those darn stickers, and we are worried that it will be stressful for him tomorrow.  The CT scan last time went beautifully, but you never know how Rock Star is going to perform.  GG just arrived to take over the care of Hope and Kyle so Mike and I can both go to UVA this evening.  Kyle is on a fun playdate and will probably not miss us too much! 

We will update the blog tomorrow with the results.  Thanks in advance for praying us through tomorrow:)  Without our prayer warriors and our Jesus we would be lost:) Off to Camp Pendleton we go to get a good nights sleep for our big day tomorrow!

Tuesday, February 28, 2012

Sunshine Therapy!

Today has been an awesome day.  The sun has been so warm and wonderful.  Today I got very happy thinking that the winter is almost behind us.  I remember those first few awful days after David was diagnosed and thinking that we would have such a long, sad, and hard winter.  Today being out in the sunshine reminded me that we still have a long way to go, but the Lord has gotten us through the winter and we are on the home stretch of treatment! 
Looking at these two sweet faces, feeling the sunshine on my face, and thinking of how much Kyle has matured over the last few months made me want to weep tears of gratitude.  I am so overcome with graititude when I think of how faithful the Lord has been to us as a family. 
David successfully went back to school today and according to his teacher, he had an awesome day!  He stayed through math and reading and I picked him up around 11:30.  He was happy and seemed very excited to see his friends again.  Of course we get nervous thinking about germs:)

I have always been excited about seeing signs of spring,  but this year they mean more to me.  This year signs of spring remind me of hope and new beginnings.  We made it through the long winter of David's diagnosis, surgery, initial chemo, and now we do see that even though we still have 20 more treatments that we will survive.
As long as we have our Jesus and each other we will survive. 

As a family we are reading a lot more about Jesus and praying a lot more.  I am sad that cancer is in our life, but I am thankful for the faith growing that we have all done because of it.  (Here is David reading to Hope from his new learn-to-read bible about David and Goliath!)  I am sad that we have had these hard months, but the lessons of God's unfailing love and faithful promises will always stay with us.  Today the sunshine has made me realize that cancer is still very hard, but because of Jesus and his promises from his word, we are not alone and that He has been faithful each step of the way! 

Monday, February 27, 2012

Lab Results

After waiting all day, UVA called this evening with lab results and it appears that David is doing well. His hemoglobin is up to 9.3 and while his white blood cell count is still low, it is deemed high enough for him to start transitioning back to school!!! So, tomorrow we have decided to let him go for reading group from 8:30 until 10:30. That will probably wear him out, but he is excited!! We are so thankful that his counts came back good today and that he is not in need of blood or platelets. This momma has lunches to pack and clothes to lay out!! Whoo hoo!!!

Monday Happenings

I am so glad to be home today catching up after a busy weekend on the road.  Our Monday morning was not easy; however, because I had to take David into our local doctor's office for a "quick and easy" finger prick to check his levels.  Clearly I was delirious because despite four awesome nurses and other wonderful people it was quite traumatic for us all to get that little blood.  Dr. Clampitt's office faxed in the results to the oncology team at UVA and we are waiting to hear from them.  We were thrilled to hear that his hemoglobin was up to 9.3!  Thanks Family Physicians for being so sweet to us this morning:)

After the trauma of that visit we came home and all three of us cuddled in the bed.  I know this sounds weird, but after a rough procedure where I have to hold David down, I get tired and weak.  I know it is just from the adrenaline that helps me hold him down, but it is the weirdest thing.  We are all good now:)
Mrs. Davis' keyboarding class at MSHS made David these precious greeting cards!  They were learning how to make cards and thought of David. David and Hope laid them all out on our bed and looked at every single one of them.  You can tell that the students know David well because the cards had Beauty and the Beast or Hokies on them!  They loved it and we saw some familiar names in that class!  Thanks guys for the love!  They came at a perfect time!
We read every one of them and they both had to comment on them!  I need to take her class and learn how to make such cute things! :)

I also got an opportunity to take some pictures at the swim meet this weekend.  Kyle did awesome this weekend and got personal bests in EVERY event he swam!  Considering the fact that he had had oral surgery on Friday we were super impressed.  It was a fun weekend being together as a family and with the Prestons!
Backstroke Kyle!
Hope and Madi playing in the gym.  We set up camp in the gym and then we would go into the pool area when Kyle or Bre was swimming.  The kids had fun running around and playing.  It felt so good to do normal family stuff and David did well!
Kyle talking to Ms. Meg after his 50 free.  We love her and Bob so much.  They have built this program to be what it is and as sad as we are that they are retiring we wish them well! They have made a tremendous impact in our Kyle's life and have taught him that nothing replaces dedication and hard work. 
On the block ready to swim the 50 free!  This is his favorite event!
Thank goodness for Ipads and other electronic devices! 
Ronnie, David, and Austin!
Mike writing Kyle's events and heats on his arms to help him keep it all straight. 
All the kids minus Hope!  David was so excited to see the Prestons and to have fun!!  We are just catching up this Monday from all the weekend laundry.  I am obsessed with keeping my laundry up in case we are called to head to UVA today. We are already planning to go there Wednesday evening for his big day  Thursday, but the doctors felt he may need to come sooner for blood or platelets depending on his blood work from today.  We are so thankful to have such a great local doctors office that helped us out today!  It was high drama getting that little bit of blood, but those ladies and Dr. Clampitt were awesome:)  Happy Monday!

Saturday, February 25, 2012

Dance Marathon

As I am blogging from the hotel here in Lynchburg, here is my view of my cuties!  We are having such a great weekend so far.  These three cuties are enjoying their complimentary corn dogs (?) and ice cream here at the Hampton Inn.
 This morning we left southwest Virginia early to head to Central Virginia.  We dropped Kyle, Hope, and Mike off in Lynchburg for Kyle's A/BB championship swim meet.  This is a meet that you must have qualifying times to attend, and Kyle is getting to swim four events this weekend.  He did very well and had personal bests in both of his events today.  He swims two more tomorrow! Considering the fact that the had TWELVE teeth pulled yesterday, we are super proud of him!

David and I traveled onto Charlottesville today for a fun outing-the dance marathon!!  All of his doctors were there as well as lots of the clinic staff and fun people.  They had inflatables, a mechanical bull, food, great music, and games.  It was so much fun and even though it wore David out, he had such fun.  Above check out David and Ms. Meghan cutting a rug on the dance floor!  We just love her:)
 Here is David posing with two UVA football players!  Look how tiny David looks next to these guys.  They were so nice to David and they did not even get mad when he told them "Go Hokies!"

 Here is Dr. Druzgall and her sweet baby boy.  She is one of the four doctors that oversees David's care.  The doctors thought David looked a little pale and what amazed me is that they remembered that his hemoglobin was 8.0 on Thursday and that he may need blood this week.  How can they possible remember my son's hemoglobin on a weekend?  They are such a great bunch of folks. 
 Mommy and David falling down in the moon bounce!  I tried so hard to not stress about the germ factor and just breathe and have fun.
 David and Miss Virginia! 
 Meghan and David jumping in the moon bounce.  It was really fun to be there today.  One of the moms spoke today.  Her teenage son was treated by UVA years ago with leukemia and today he was cancer-free at the marathon.  It gave me such encouragement that there will be life after cancer and treatment.  Right now we both have tunnel vision getting through each weekly treatment and we have not allowed outselves to think much beyond the next set of labs, chemo, and clinic visits.  This weekend has given me hope that life will not always revolve around chemo:)

Kyle has swam really well today considering....
 the fact that these little treasure boxes contain 12 of his baby teeth that were pulled yesterday.  He needed to have these teeth pulled to prepare for partial braces.  His adult teeth were trying to come in before his baby teeth were out.  I am so impressed that he had oral surgery yesterday and swam great today!
Hope and David were very excited to be Kyle's nurses yesterday when Mike brought him home from his procedure.  They laid next to him for hours while he slept-it was so precious.

We are excited for another day tomorrow of enjoying being together and cheering on Kyle in the pool.  This little getaway is just what the doctor ordered for us all.  We are so thankful that David felt well enough to go dance and that it worked out that we were already nearby for Kyle's swimming.

Thursday, February 23, 2012

Clinic Visit

We are back from Charlottesville!  Overall the visit went well, even though the scale said that David had lost 3 pounds?!  The doctors were not concerned about it, so we will not be either:) Dr. Alisanski (our primary doctor) was "thrilled" with his progress and thought he looked well.  When your oncologist is happy then you are happy! 

Next week will be a busy clinic visit.  We will start at 10:30 in the radiology department where David will have a repeat CT scan to on his lungs, kidney, and abdomen to make sure that no new lesions have developed.  Clearly scans will always make us nervous, but we are trusting God.  The next stop will be in clinic for his weekly Vinchristine chemo which will just be a push in his IV.  Then we will have an EKG and echocardiogram to make sure that his heart is still handling all this chemo okay. 

Depite the good clinic visit today, it was kind of heartbreaking to see that David is associating clinic with a port access and that he is now reluctant to get out of the car:( We had a little drama with getting his port accessed today, but after that it went okay.  It is so hard to have to hold him down for getting his port in and then taken out.  Despite the fact that we do it weekly, it never gets easier for me or Dave. 

The great news is that his counts are bottoming out now like they should be.  I am looking at keeping up the nightly G shots for another 7 days or so, until they can get back in the normal range.  He is already suffering with some back pain that is associated with that, but a heating pad typically works well.  We take it everywhere with us!  We pray that his counts will rebound as they should and that his chemo can stay on schedule.  Today was tretment #11  out of 31.  Despite the fact we are still facing 20 more treatments, we are thrilled that the big surgery is behind us, all the abdomen and lung radiation is done, and we have already successful navigated our first bacterial infection. Little victories!

The other exciting news is that we got the green light for some fun this weekend!!  Kyle is in a swim meet in Lynchburg this weekend, so Saturday morning we will leave here as a FAMILY and head to Lynchburg.  David and I will travel on to Charlottesville for the dance marathon.  There is a dance marathon Saturday from noon until midnight to raise money for the UVA pediatric cancer clinic.  Fraternities and Sororities dance all day to raise money.  From  noon until 2 there will be family friendly activities and we are excited to go to UVA for a fun reason.  All of David's doctors will be there as well as the clinic staff.  The video that David made will be shown during the marathon as well.  We heard today at clinic that the doctors did a dancing video that will be shown as well.  I think it will be a fun afternoon.  We will then head back to Lynchburg and cheer Kyle on Sunday in his events before heading home.  I am not looking forward to packing another weekend bag, but it will be so much fun to head out for some weekend fun:) We pray that David is up to all the fun this weekend.

Thanks for your prayers today to help us through another clinic visit.  We are thrilled to check another visit off of our protocol list! 

Tuesday, February 21, 2012

Sneaky Cancer

Cancer is so sneaky.  When things are going really bad you stress.  When things are going really good you stress.  It is just the nature of the beast.  The last week David has felt so good that Mike and I have both freaked a little.  I know it sounds crazy, but we both have wondered if the last dose that was reduced was too reduced:)  Even though we have the peace of Jesus, doubt still creeps in.  (And we also have a cute little girl in our house that loves to wink and you remember that life is still good).


Despite how much we worry life is still ticking on here on the homefront.  Hope and David are loving their snuggle time and play time during the day.  We are all addicts of the game Words with Friends on our Ipads, and we look forward to what spring will bring!  Kyle has roughly 12 weeks left of school!!

David is really having a good week. The shots are going well, his appetite is still great, and he seems to be feeling well.  I know that Mike and I should both be on cloud nine, but we both have been a little edgy.  I even picked a fight with him tonight because I did not like something he said yesterday:)   We both are just a little on edge.  We are excited that Kyle is excited for Little League to start, we just signed Hope up for swimming lessons with three other sweet little girls, and every once in a while I allow myself to dream for a moment about David's big remission party we are planning for the summer. 

But about the time that you think that life will eventually get back to normal, the cancer word sneaks back in and doubt takes over.  Cancer is so sneaky and permeates every part of your life.  I think anyone that has walked this journey would agree that cancer affects everything.  David has a clinic visit this week which hopefully will just be a day trip.  Next Thursday will be a big day with another scan, chemo, and echo on his heart, and his monthly antibiotic.  Maybe we are both just nervous about the upcoming scan, but during this time when things are going so well is when we have both been the nervous.

So tonight we are praising God despite our nervousness and concern.  We are choosing to remember that God knows our hearts and that only HE can calm our fears.  He knows that we are nervous about the scan.  He knows the word relapse has entered our minds before treatment is even over.  He knows that we both bawl when we think about this life without David.  He knows that we both put on a happy face but underneath we are both scared to death. 

The cancer journey is not for wimps.  Mike and I both have stumbled along a stretch of this journey where doubt and fear are trying to overcome us.  We are scared but because of Jesus we still have hope.  This is why we need Jesus not only during this journey but everyday.  He is the only one that is bigger and mightier than white blood cell counts, relapses, infections, and cancer.  Tonight we are so thankful that he is our Alpha and Omega because without Him we are scared and anxious parents.  With him on our side we are all mighty warriors warming up our sling shots to take down this Goliath.  Praise you Lord!




Monday, February 20, 2012

Snow Day!!

We feel so blessed to be living in this winter wonderland today.  The kids are off from school and we are just home enjoying being at home with nowhere to be.  The snow is already starting to melt, so the roads were not too dangerous for Mike to take Oma back to the airport today.  The kids have thoroughly enjoyed her visit and we are appreciative of all the meals and help that she has provided. 
This might be one of my favorite new pictures of the three!  I love the background behind them:)  David lasted about 15 minutes before we got tired:)
As always, Kyle was my huge helper outside.  The snow was a little deep for cute girl, so she insisted that he hold her hand to help her from "slicking" which I guess means falling in the snow to her? We love her made up words!
I love this cute little face and thanks to Sydney Carter she was styling in her matching snow bibs, coats, and gloves.  Cute!! 
I love these angels!  It felt so normal to be dressing everyone up to head out. David was sooooo excited to get out!  He has not been outside since he came home from the hospital so it was fun to get out.  He had fun but the snow made him so tired. 
Look Mom!!  Snow!!






Our beautiful winter wonderland.  This is a view from our back deck looking out over the golf course.  This is my favorite type of snow because it is beautiful but the sun is already out and the roads are clear.  :)
Sweet best friends.  Hope lasted longer than Dave, but she got nosy and wanted to go check on him inside:)
My brave Kyle loves the snow!  He is a little wild...




but he also loves a good wipeout!!! :) This day is just a blessing.  I am so happy to be home and I am beyond thankful that so far David is feeling great.  His appetite is still good and last night Mike and I rocked the G shot.  It is a big production, but about 30 minutes before I gave it to him, I put some numbing creme on it right after he went to sleep.  I then allowed him a chance to get into a deep sleep and I gave it to him slowly and he NEVER WOKE UP!  I cannot tell you how happy we were. I had prayed so hard about these shots, and once again God is there.  Have a great Monday!

Sunday, February 19, 2012

Sadly blogger is not letting me put some really cute pictures on here today, so this will be a pictureless post:( Maybe tomorrow!

We checked out of the hospital yesterday mid-morning and headed home. Kyle and Mike were playing basketball in Wytheville and we were blessed and got to stop off and catch one of his games. Kyle grinned really big when we walked in the gym, and David took off and jumped into Mike's arms.

I usually tear up at our hellos as much as I cry over our goodbyes. So far since being home, David has felt great. We started the G shots last night and we waited until he was asleep and tried that method. He definitely woke up, but he only cried for less than a minute. Sometimes the anticipation of a shot is way worse than the actual shot with David, so we will keep with this method for another night. Let me be clear that these shots are so not fun, but we try to keep in mind that these shots are raising his white blood cell counts to help him fight off infection.

We got up super early this morning to watch Kyle play two games of hoops. For once we were okay with the early games and losing early because it started snowing during the games and we came home on white roads. This is our first real snow of the year so everyone is super excited.

After almost two weeks of being here, Oma is planning to head out tomorrow. She and Hope got to have lots of girl bonding time while were in Charlottesville and Mike has certainly enjoyed her good cooking. I think she has made him fried potatoes twice while she has been here:)

When I got home yesterday there was a learn to read bible waiting for us. Our sweet blog reader from Alabama sent us a learn to read bible to help in our home schooling of David. It is so precious. But what is even more precious is the note that she wrote to me. It spoke right to my heart and I was so appreciative of her kind words.

She also included an amazing letter addressed to Kyle. It took my breath away because it talked about how being the big brother is a responsibility. What a thoughtful and wonderful gift. This bible is one of our new favorite books in the house because it came with such love.

I also received a precious book in the hospital from a sweet gal I used to go to church with. She herself has walked in our shoes of caring for an ill child and the book is called A Different Dream for My Child and I am anxious to read it. Thank you Catherine for the visit and book:)

Even though we are home and enjoying a relatively normal weekend my heart is still heavy about Haley. I plan to call this afternoon and check on them.

We are waiting for a big snow to calm life down for a day or two. I have some laundry to catch up on and some cookies to bake with my favorite girl. When you are in the hospital for days on end and at the mercy of the cafeteria, there is nothing I like doing more when I get home than cooking for my family. An extended stay at the hospital makes me appreciate the boring household chores when I get home. I am giddy over the thought of helping Kyle with his cloud project this afternoon. After being away for so much over the last few weeks and feeling so out of the loop, I look forward to an afternoon with my favorite ten-year old, a poster board, and some markers. :)

I am getting organized for Moms on a Mission and hope to get the ball rolling later today on it!! My heart is so happy about the idea of this local mission project to bless less fortunate children in our county with a group of some amazing and talented Mommas!!

Friday, February 17, 2012

Friday wrap- up

Our week here on 7 central is almost over. Hopefully tomorrow night we will be sleeping in our own bed at home. He is receiving his last chemo now, and he will have to receive 12 hours of fluids post-chemo to flush the toxins from his body. The team does not want chemo sitting in his good kidney.

He is definitely fatigued today. He went to school for about an hour and a half this morning. the teacher that he knows here is Ms. Cathy who was actually a sub for the regular teacher who is now back. I think David misses Ms. Cathy and is taking A little time to warm up to Ms. Wendy. Ms. Wendy is super sweet too and did get some great work out of him. I did have to get Nurse Lisa to escort him to school because he knows he can turn on the tears for momma!! It is important to us that he keeps up with his school work.

After school and lunch he did get to make his video for the dance marathon! He made us all tear up when he looked straight at the camera and said "my name is David. Thank you for dancing with me". We cranked up the song "Sexy and You know it" and he broke out some great moves. He did awesome and I cannot wait to see the finished product. I also might add thatbhe was rocking the VT shirt in the video!!

On a sad note, sweet Haley is super sick today. She has diarrhea and is just sick. Sadly her team has run several tests on her to see why she is sick, so she is in isolation all weekend until the results come back. Poor baby-she has slept a lot today and cried to see David when she was awake. Please join me in praying for them this weekend. Being on isolation during the weekend is brutal for such a social butterfly like her. We have done it two inpatient trips ago and it is so hard. We are also anxious to get the results back since David has played with her so much this week.

As anxious as we both are to get home, we will be nervous taking him home with his counts being so low. We have to start the G shots Saturday night to start building his white blood cell back. We will have to return Thursday for Vinchristine and a check up to check his counts and weight. Rock star has continued to chow on hospital french fries and spaghetti. We have never seen him eat this well at the hospital!!!

Please pray not only for Haley, but for David that hedoes not get another infection. Good night from 7 central and hopefully tomorrow we can head down the interstate!!!!

The Sinful woman

I am still working my way though Jesus One and Only bible study. It is so rich that I can only swallow small portions at a time. This morning I was reading Luke 7:36-50. Jesus was eating at the home of a Pharisee and this sinful woman came in and started washing his feet with her tears. The Pharisee was shocked and asked if Jesus knew who this was?

Jesus used the woman as a lesson on his forgiveness. To him we all are sinners, and need his forgiveness. He asked the Pharisee who would love him more? Someone that paid back a small debt or someone who had a larger debt forgiven? Clearly the bigger debt! That parable hit me hard this morning that the more sinful we are when we come to Jesus the more we love and appreciate his gift of salvation because our debt is so big.

How many times have we felt like the sinful woman crawling to Jesus wiping his feet with our tears? Sadly my pride, arrogance, gossiping tongue, or just plain righteousness has sent me crawling on my knees to Jesus begging for his forgiveness.

Now, In our dark days of this nightmare when I so clearly see his glory shining here in this place, I am so overcome with shame for my apathy. I feel like crawling on my knees this morning to him in thankfulness for the times that He has been so faithful to me and I have been merely lukewarm to him. The nightmare has shown me that even though His plan is not always easy, He is here and he loves me dearly.

I just pray that one day he will speak the words to me like he did to the sinful woman in verse 50. He said to her "your faith has saved you, go in peace".

Thursday, February 16, 2012

Today's news

Well it appears that our Rock Star has his first big break into the entertainment industry tomorrow! On February 25th here at UVA there is a dance marathon to raise money for the pediatric oncology clinic that serves David. Tomorrow David is going to make a video of him dancing to show during the marathon. We have been practicing some moves tonight. The four oncologist that serve us are doing a choreoGraphed video for the event as well. It is going to be super exciting!! We signed permission tonight so a videographer is going to come tomorrow to video.

David has had such a great week. His chemo is dripping now while he watches Lion King. Except for some fatigue he has felt well. He has gone to school for about an hour each day and he has enjoyed his playtime with Haley.

Despite our wonderful week, there a some sad situations on the floor here and my heart has been heavy with lots of little ones here. It seems that the helicopter has landed more here than usual which never is good. This morning puling into the parking garage I saw a small bundled being unloaded off of the helicopter and my heart sank.

I know I have said this before, but this place is awesome. We have all the love from home, plus love here on the floor. Sadly we have been here more than home lately and we have made some sweet new friends. we are so touched by all your blog comments, texts, messages, and emails.

We are still on schedule to leave Saturday around lunch. I am flying solo here until Saturday. Pops came to pick up GG and they went home tonight. Mike's mom is running the household back at home and it appears that she and Hope are having lots of fun together. We are so appreciative of all the help we have and I am so excited to head home.

Please pray specifically that David does not get sick this time with a scary infection. As excited as I am to come home, we are nervous to leave. We will have to return this Thursday for chemo (Vinchristine for week 11) and the following Thursday (march 1) we will return for another Vinchristine plus a CT scan, echocardiogram to check heart function, and antibiotics. We will always have scans every six weeks. Those will always make us nervous because we will always be concerned that new lesions will have popped up.

That is the update from 7 central today!

Lingo

Rock star is still rocking this chemo round. We are amazed at how well he is eating and drinking this time. We will never know if this has been easier because it has been dose reduced this time or if the radiation last time made it so brutal. We just pray that when we come home he does not get another infection.

I laugh at how clueless we were when this started. We truly minimized a weekly chemo dose and thought it would be a breeze! What a joke now that we are walking this path. Chemo is not for sissies. Yes it can take away those awful cancer cells, but it is basically toxic poisons that can create a whole host of other issues.

So I was talking with another momma here on the floor and we started giggling that canncer has it's own lingo so I thought I would share!

Neutrapenic- this is when David' white blood cell count is so low that hisbody cannot fight infection. Tis round of chemo is meant to make him neutrapenic and wipe out all fast growing cells. Sadly chemo is not sophsticated enough to only go after cancer cells, so it must go after all fast growing cells such as white blood cells and hair cells. The G shots will help his body produce more white blood cells to bring his levels backup so he will not be neutrapenic.

"making counts" this is referring to his white blod cells returning to normal so that the next round of chemo can stay on schedule. Davids chemo regimen is intense so his white blood cells must be back over 750 before the next round is given. Last week when Mike brought him he did not make counts for this round. It is important to make counts to stay on your regimen.

"push" vs "drips". This is how your chemo is delivered. Some of dave's are simply a push in his IV and some are long drips through his IV. David is also on Zofran every fourhoursmto keep nausea at bay.

"loved" here if a family is loved that means that we are blessed with lots of support. Sadly not all cancer warriors have the love that we have been blessed with. The nurses tell us all the time how important it is to have support. We are blessed with family that keeps the house running at home, visitors and love here when he is not neutrapenic, a parent bedside here with David, and love from you all. We feel the love and between that and our Jesus we are sustained each day here.

"the team" refers to the four pediatric oncology doctors that run this department and all their residents and interns. We like all four of them and we are so impressed with the communication between each of. They are all four competent and are always up on David's case. They are apart of the COG group which is a huge conglomeration of pediatric oncologist around the world that shares information. Protocols are set so that regardless of you are, if your doctor is part of COG then you will receive the same treatment.

Hope this post has not bored you but sometimes here we feel like we are in another world speaking a different language. Thank you for reading our blog and praying for our Rock star. We are so blessed to have the prayer warriors praying for us each and everyday as we battle this Goliath.

Wednesday, February 15, 2012

Corn dogs and spaghetti

Our Rock Star has had another great day!! He has chowed down on some spaghetti and a big fat corn dog!! He did not like corn dogs too much before chemo, so we are thrilled to find another high fat food he will eat. He has gone to school today, played with Haley, and had lots of fun doctor and nurse visitors who came by just to visit. This place is so awesome.

The good news is that we get to come home Saturday. During evening rounds, the oncologist said that the team feels that the one time shot is too harsh for his fragile system, so the bad news is that we will need to to the daily G shots instead of the one time deal. The team is afraid that if the one time shot is too much for him, then it will delay further treatments as we may have towait longer for his counts to bounce back. Of course we are disappointed, but God will give us the strength to do these. We will also have to visit our local doctor twice weekly for blood sticks to check counts.

It appears for now his current port is providing some reliable labs so we are so thankful. Messing with his port is dramatic for us all, so we are thankful. His phosphorous is coming in high, which is not too worrisome, unless it continues to come in high and stay high.

We keep accusing the doctors of forgetting to give him chemo, because except for some back pain and fatigue he is doing great. He has never chowed on corn dogs while in treatment, so this is new for us! He has really had a great day. Ashley surprised us and came to visit for a little while today. David invited her here yesterday via FaceTime, so today she showed up! We all had fun giggling and catching up.

Good night from 7 central

See You by Josh Wilson

But on the darkest days I won't let go
It will still be well within my soul
Even when the answers don't come easily
Because you said you would never leave

So I know you are standing here
You have been Crying these same tears
Yeah you have been here all along
So give me strength to just hold on


This morning the song See You is in my head. I love it and the words above speak to me today. These months have certainly been some of our darker times, but we keep clinging to the promises from God's word where He has promised never to leave us. Despite the nightmare, it is still well within our souls because of Jesus.

God is so present here on 7 central. All the joy and laughter that was present yesterday for heart day could only have come from the Lord. There are some amazing people here fighting somehuge Goliaths like we are but we all keep fighting and clinging to Jesus. I hate that we have to be here, but I feel so blessed because of our new friendships with some amazing people here. The professionals here are so kind and loving to us. I did just find out some inside scoop here yesterday that made me smile. Two of our favorite people here are newly and secretly dating and that makes me happy.

Kyle and hope seem to be doing great. We hope they can come up in a few days. Hope has been on the Valentine party circuit and today she is going to playgroup. We are so blessed to have some amazing friends that have taken her out for some playtime. Oma and mike are holding the fort down at home. Kyle has a big basketball tournament this weekend which he is excited about. That boy loves his hoops!

Dave is tolerating the chemo well so far. The dose reduction seems to be easier on his fragile system. Down Syndrome makes his system more fragile and often children with DS have to have chemo protocols dosed reduced. I just pray the decreased dose is still effective. Please pray for his port. The last three labs that were pulled off of it were not valid which means that we may need to deacess and start over.sigh.

Have a great day and never forget that God walks with us every step of the way whether we a in a storm or enjoying the sunshine! Good day from 7 central!

Tuesday, February 14, 2012

Feel the Love

Rock star has had a great day. Despite the chemo, he has so far not experienced any nausea or vomiting and has eaten super well. He ate a ton of spaghetti and meatballs for lunch and we have had lots of sweets today. Thank you for your prayers.

I will add that this chemo regimen of etopicide and cyclophosphomide is a double whammy and is meant to wipe out his white blood cells so he is considered neutrapenic now. That means that as those white blood cells and ANC levels drop he can catch anything. That is how he got so sick this last round. The doctors are saying no children visitors this stay. Thankfully David is not on room restriction and he can see Haley, but no outside visitors during the winter.

There is great news though!!!! We thought that when we discharge we will need to do daily G shots to help increase his white blood cells quicker so he can make counts for his next round to stay on protocol. His body will replace white blood cells that the chemo has wiped out, but the G shots speed up that process so he can stay on this intense regimen. Today, we found out that our insurance will cover a one time outpatient shot that will replace the daily G shots!!!!! That was better than six dozen roses for this momma for Valentines day. We have done it, but those daily shots for two week are brutal on all of us.

So this means that when we discharge on Saturday, we will stay here in cville, until Monday morning. We will visit clinic and get that one time shot and then be on our way home!!!!!

Today we have certainly felt the love here. I wish we were home instead of here, but we feel the love here tonight. We feel it from you, our friends here in 7 central, and of course from ourJesus. David and I have had fun singing praises songs to our ultimate Valentine-Jesus!! I do have some prayer requests that I would like to share tonight.

David-please pray this dose reduced chemo is effective and that he does not get a serious infection this go around.

Haley-sweet girl is still waiting on a heart. She looked gorgeous in her red sparkly Valentine dress today. Also her parents have to go home tomorrow for an insurance meeting over their home where it burned down. They are leaving tonight when Haley goes to sleep and they will get their business done and come back tomorrow evening. That will be 12 hours of driving for them tomorrow.

Bob Atwell-he is from Rural Retreat and was diagnosed with cancer around the same time David was. He is in the hospital tonight fighting a port infection which is what David has alreDy had. These infections can be serious and Mr. At well could use some prayers for healing from this infection.

Anna-she is our new friend on seven central. She is almost 2 and is fighting leukemia. She and her parents are such sweet people and they brought us some Valentine cake tonight. She still has two years of treatment ahead of her, but she is such a cute fighter.

Sorry this is so long. I am so thankful for all the love in our life tonight. We are not where we want to be this heart day,but we continue to sing praises to Jesus who is our ultimate Valentine.

Heart Day

Happy Valentines Day from 7 Central!! Today is going to be awesome if our sleepy Rock Star will ever wake up!! His last chemo finished close to midnight last night so he is snoozing this morning. We made a bag full of treat bags to hand out to the nurses and other friends today so I am excited to spread some Valentine love. So far so good here on 7 central!!

Last night we had such fun with Haley. Her mommy went out and bought the cd for the song sexy and you know it and they danced their hearts out and played some basketball. Haleys family is in good spirits and we enjoyed catching up last night. David leaned down and gave Haley a big Valentine smooch right in front of her Daddy. I will have to school my son on how not to kiss the cute girl in front of her Daddy!! Ha!! Hope he is not cleaning his shot gun up!!

One of my friends gave me a new CD and I am now in love with Josh Wilson and his song See You. YouTube is not letting me link it up this morning, but I am loving this song. I get so much encouragement from praise music. I am so excited to get the ball rolling on moms on a mission and I am so excited about how many momy friends are ready to roll their sleeves up and love our neighbors.

Cutie is waking up! Happy heart day!

"This is the day that the lord has made. Let us rejoice and be glad in it"

Monday, February 13, 2012

Long day

After seven hours of clinic, we are finally in a room!! We are in room 50 on 7 central. David did not even get into his own room before running down the hall to check on Haley! The amazing news is that David has put on three pounds in three weeks!!!! I love Benecalorie and Ghiradeli brownies!!! His neutraphils were 900 ish so we have the green light for chemo! We will be here through Saturday. The doctors think he looks great and are thrilled with his weight gain!!

It has been a long day and my foot is throbbing. An ER doctor looked at it and said that I broke two toes and that I need to keep wearing this boot that my grandmother let me borrow. My foot is blue and swollen but hopefully with rest and elevation it will heal quickly. My nerves are wearing thin today playing the waiting game. We had to wait for a clinic room, wait for his port to be accessed, wait for his labs to come back, wait for IV to start, wait for a room on the floor to open up, and now after seven long hours we are in a room. He still has to have chemo today.

Thank you to you all for your kind words about my incidents yesterday. Just know I do not always show great restraint when it comes to my babies!!! Ask any Hornet momma and they will attest to how high strung I get watching Kyle play sports. Kyle often plays post, and he can get pretty beat up in that position and I often "encourage" the referees loudly to call a foul! There is also a funny story floating around about something I accidentally yelled last year during a game. Mike and I are super competitive and being a Christian sports Momma is very difficult to do. Sports mommas-do you agree???

I am ready to call it a night! I need some down time and rest desperately!!!!! Early goodnight from 7 central!!

Sunday, February 12, 2012

Worst day ever. Seriously.

Today was seriously awful. It was so wonderful to socialize with my Hornet basketball Mommas and cheer on our boys, but some bizarre and sad events happened along the way. First off, before heading to the gym to cheer on our boys, I had to organize my stuff for our upcoming week. In my rush, I was barefoot and slammed into the frame of the door and David's bed. I am not sure what Is broken, but it is swollen and blue tonight and hurts. I am going to get an x ray tomorrow, but today I just iced it and hobbled. I can barely walk.

Then our Hornets made it to the championship game in our age division. Sadly we lost In a heartbreaker at the buzzer to a team we beat yesterday. It was a competitive game, but games like that are character builders. Kyle was so upset after the game, and he also had to say goodbye to me and David because we were heading up the road to cville. He was crying over the game and the separation. I love that my boy has a competitive spirit, but it is a heartbreaker to lose.

Then after the trophy presentation, I loved on my boy and said that hard goodbye. I left the gym crying because leaving is always so hard, and one of the parents from the opposing team made the comment loud enough for me to hear that I was a crazy person to cry over a basketball game.

Oh I so wanted to hobble over to that lady and let loose. Lord knows I was entitled to clue her in as to why I was truly crying and it had everything to do with upcoming chemo treatments and saying goodbye to my big boys and nothing about losing to their team. I am still very mad thinking of it, but this is one of those times I am choosing to let God be the judge. Sadly that lady made a hard situation even harder by choosing to judge me.

Then I remember all the times that I have chosen to be righteous and judge others. Maybe that lady that I got frustrated about driving so slow last week was someone like me tonight who was bawling too hard to drive the speed limit. God used that lady tonight to show me first hand how it felt to be judged so that I may twice next time before judging others.

Then on my way to UVA tonight Dave wanted pizza. I pulled into Little Caesars to get him a pizza. As I was getting in the car, may door apparently touched the door beside me. I did not know it because I was getting David all set up with a pizza picnic in the car. She tapped on my window and started calling me a witch that starts with a "b" over and over. The day caught up with me and instead of mouthing her back I just started bawling on her. I explained my side and she continued to scream obscenities at me. I finally just apologized and drove off. It rattled me so bad on top of the comment at the gym, leaving my family again, and my throbbing foot, that I continued to cry even harder.

Then I had a geat chat on the phone with a friend and Hornet basketball momma, about our faith and how hard times are used to strengthen our walk. She had also given me a new praise CD that i got to enjoy on our ride down when I could talk Dave into turning down his iPad!

A long, hard day has ended well. Me, my mom and Dave are snuggled into Camp Pendleton tonight. I pray we get good news tomorrow and this chemo is a go. Good night from Camp Pendleton!

Fun Distraction

We were so sad when David was sent home from UVA thursday, but it has been such a fun weekend. We have helped host a basketball tournament here which has mean a lot of hours and work on Mike's part. It has gone well and we are heading back for more games this afternoon.


These two have enjoyed snuggle time, playtime with Oma, and more play time with Ashley and Matt! It has been super cold here this weekend, so it was so great that Hope could stay warm at home.



We love our basketball family. Everyone has pitched in to make this a smooth tournament. I have personally enjoyed it so much catching up with my Mom friends:) Being in the hospital three hours away is a little lonely for this social Momma. :) Mike has worked so hard getting to the gym before the sun has come up and staying until late in the evening.




We have done well and we are heading back for the championship bracket today. We love the kids on the team and we love the families involved.













This boy loves basketball. He loves his team and his loves the game. I think I can hear balls bouncing in my sleep:)



























Kyle has a lot of heart. He gives it his all and takes it hard when they lose. This tournament has been a welcome distraction for me. I love cheering on my boys and all my "team boys" playing their hearts out. I have even had some fun "helping" some referees keep up with who is fouling my boy! Mike only told me to hush a few times yesterday! HA! I am a super competitive Momma that gets a little Momma bear over my boy.




We are off for another full day. Sadly my next blog post will come from Camp Pendleton tonight as we head down the road later today! In the meantime... GO HORNETS!