Tuesday, January 31, 2012

A Quiet Day

Guest blogger is back. Laura and David both fell asleep very early tonight and I signed on and saw that Laura had not had a chance to update folks on David. David is feeling pretty good but seems to be very needy and a little whiny. He did eat some today but still not enough. The thought of eating sounds good to him and he asks for certain foods but often after a bite or two he is done.

Laura is being a great nurse and has done a really good job with hooking him to his meds and cleaning his line/port. After our first experience last week with heparinizing his line and it did not go so well, she is so much more confident.

My mom is going to be able to come down for a few days starting next week and help out. She is excited about coming and spending some time with the kids and helping where she can. Laura's parents have been amazingly helpful. GG has stayed at our house as much as at her own over the last month and we are so appreciative of her help with the kids and the house. Pops has been going up and helping Laura when I am in Marion working and attending to things here. We are so appreciative of all the help from family and friends. I have learned a great personal lesson over the last three months to be more accepting of help. I was raised to be super independent which has served me well in life but God has stepped in and used this tragedy to teach me so much.

As we all walk our personal journeys in life please remember to spend a few extra minutes listening to a friend, loving on your family, and focusing on our God and His desire to have a personal relationship with each of us. Many blessings are wished to you and your family by the Robinsons. When Laura wakes up she has some really cute pictures to share from their day at home. We were blessed with lots of good food today from friends and we are well stocked with amazing food for the rest of the week. Good night from Camp Robinson.

Monday, January 30, 2012

Heaven

Until I get to go to the real heaven someday, this home feels pretty close to it tonight. My king size bed is calling my name, but Dave and I are staying up to do our next dose of Cefepime via his port at 11:30. Tomorrow we are going to work on a better schedule for this, but tonight we have to give it late. I have successfully already given my first dose of the antibiotic via his port and we both did great!!

The big news of the day was that Miss Priss Hope Madeline went to preschool at the hospital today with Haley! They were the only two little girls in the class and she LOVED it. I am so impressed how less shy she is becoming. She had to be "checked out" by a nurse and then she got a sticker on her dress to say that she was safe to be in school. She went from 9-11:30 and then went back again from 2-3:30. She loved it and here is a terrible picture. I was trying to be sneaky and get a picture where she could not see me and it turned out terrible:) I am so proud of our shy girl who branched out to be with a new teacher today. That is such a WONDERFUL service at the hospital. Patients and their healthy siblings can participate in school at the hospital. The other miracle is that she painted a huge picture and we managed to get it home unharmed in the car! Ha!
These weird looking bottle things are all over our fridge because this is his medicine that we have to give via his port. A nurse came and educated me right before discharge and frankly we did okay:) Because his infection was pretty serious he will need to be on this medicine through 2/7/12.
Here is sweet girl in her own bed and snuggling with her new "alvin" that she made at Build-a-Bear. The hilarious part is that she thinks that this Chipette's hair looks like David's now! She said "wook Mommy-her hair is wike Dave's" I just about rolled in the floor. She also calls the elevators at the hospital "Alligators" and is obsessed with riding in them.

Tomorrow my youngest babes and I are going to cuddle, snuggle, and rest up. I am weary tonight from a long day today. I am so thankful to be home even if we have to return Thursday for a check up and port change. The doctors are hopeful that his nutrition will kick in better at home. He was on TPN (liquid nutrition) in the hospital but that is not a great long term alternative. Since we have been home tonight he has eaten some oatmeal and some Hershey kisses. He is painfully skinny but now that his counts are rising and he is home we are praying he will start eating better. We are trying to avoid the feeding tube via his nose.

The other problem he is having on a regular basis is severe back pain. He cries often with his back hurting and the pain is attributed to the GCSF shots. They do cause back and joint pain and thankfully a heating pad seems to help. Poor pumpkin.

We are so thankful to be home. I hate the packing and unpacking part of the hospital, but we are so blessed that Camp Pendleton has laundry. I mostly brought home clean clothes that I can repack for next week. David and I will be sticking close to home since he is considered neutrapenic due to his low counts. No public places, school, or Walmart for this Rock Star anytime soon. We are going to have school at home this week and enjoy our time resting up.

Thank you dear friends for praying us through this last 8 days in the hospital. The Lord protected our Little Rock Star and we are so thankful. Good night from Camp Robinson!!

Sunday, January 29, 2012

Sunday evening news

What a super fun weekend we have had. Blessedly David has felt very well and has gotten to play some. He is still extremely weak, but we are over the moon about getting to come home tomorrow. This hospital stay has been brutal on his little body with that nasty bacterial infection. We are thrilled to come home and let his body rest and recover. Sadly he will not be able to go to school or be in large crowds due to his low counts, he is considered neutropenic and he will be staying home with me. His weight is down to 45.8 as of tonight,, so hopefully some home cooking and rest will strengthen his little body for his next five day battle on February 9th.

This weekend I have so enjoyed having Kyle and Hope here. Kyle and Mike headed home this morning and Hope stayed here with me. GG came today to help me. GG sat with David today and Hope and I headed to camp Pendleton for a nap and then we stopped by the mall for a little Build-a-bear fun. She made a cute girl chipmunk from the movie. My sweet girl stuffed it with 2 hearts-one for her and one for David. She is at such a precious age. She is beyond excited to come back to hospital tomorrow at nine in the morning to go to preschool here with Haley. Patients and their siblings can attend school here and there is an huge bunny in the preschool room that she loves. She is super excited about preschool here at "dave's big hospital"

Tonght during my bible study I stumbled across John 9: 1-3.
As he went along he saw a blind man from birth.his disciples asked him, "Rabbi, who sinned, this man or his parents that he was born blind?"
"neither this man nor his parents sinned", said Jesus, but this happened so that the work of God might be displayed in his life.

Wow. That scripture speaks volumes to me in terms of the first Goliath in David's life called Down Syndrome. God did not goof and
accidentally add one extra chromosome to sweet David, but so that His work may be glorified. When David reaches an unexpected milestone or is protected from a possible life-threatening infection like this week we have no choice but to give God the glory. I also think of all the sweet faces of our friends at our Down Syndrome buddy walk and could just bawl happy tears. God's handiwork is so much more evident in these "differently abled" friends. May God continue to reveal his glory through David and all of his friends.

That scripture also reminds me that God is always working and that when you receive a diagnosis such as Down Syndrome or even cancer, that we must step back and allow God's plan and glory to be revealed. I am not sure why we are sitting here at UVA with my sick boy or even why he was given an extra chromosome, but I pray as a parents we allow God to be the center of our family so that He will be glorified through these Goliaths in our life. Goodnight from 7 Central for what we pray is our final night this stay:)

Saturday, January 28, 2012

Family Day

Hello from 7 Central. David is continuing to do better. He has eaten 7 or 8 bites of food throughout today which is not much but at least he is willing to eat a few bites.



David ate a few bites and was rewarded with some time with his buddy, Haley. Mrs. Kathryn the music therapist had a spontaneous music session with them in the hall:)




David getting to open one of his presents this morning.






David, Haley and Hope playing Ipads. They had a great time. It makes our hearts to happy that he feels good enough to get up and play. He still has very little stamina and tires easily, but it is nice to get out and socialize!



Mommy and Hope. Both Hope and Mommy are having a great weekend hanging out together.




Mommy with her oldest and youngest:) Hope is so shy here and she is so scared of David's IV pole and hospital bed:)


We have really enjoyed some family time! We were able to go out to Whole Foods to pick up some stuff for David and to eat some yummy food for lunch. The nightmare has made us treasure each moment:)


Happy Saturday afternooon from 7 Central!

Friday, January 27, 2012

Ahhhhh

Ahhhh this feels right. All five of us together under one roof. Granted it is a hospital room and one of my babes is still hooked up to lots of IV's, but we will take it:) The nightmare has taught us to enjoy every moment!

A sweet blog reader sent us this homemade Noah's Ark pillowcase! Isn't it precious?! Not only did she make David one, but she made 14 additional ones for other children on the hall! Thank you for the love. It makes me smile to think that my baby is sleeping on the God's promises:)
He felt well enough today to sit in the blue chair and watch Tangled on Netflix.
Tonight when Hope came to visit, she pulled out all of David's coloring stuff and wrote her name for me! I am so proud of her:)
My sweet Kyle snuggling his David. It was such a happy reunion tonight! It has been a long week and it was good to enjoy some family time. I took Hope and Kyle to Chick-fil-a and Sweet Frogs tonight while Mike had fun with David.
David is feeling much better tonight and even had a little energy to play with Kyle. After a few minutes he wanted to keep playing, but he had to sit in a chair:) Having his brother and sister here has been such good medicine:)
Our sweet boy. I get so overwhelmed with joy when I think about how much worse this week could have been:)
Love seeing my sweet boys play together.
Hope and Daddy sharing some alfredo:)

Tonight the oncologist met with us for a while. It appears that we will get a break next week to let his body recover before the next five day intense chemo on starting on February 9th. We are so thankful for this repreive and hopefully if all goes well we can come home on Monday on IV fluids. We will have to return to clinic on Thursday for a check in and for a port change. Please pray that David's appetite returns quickly. We are very concerned about his weight since it has dropped down to 46 pounds.

I am heading to Camp Pendleton with Kyle and Hope for a sleepover and Mike is staying here with David:) It is so awesome to be together!

Thursday, January 26, 2012

Our boy

We are worn out tonight. Poor Rock Star is feeling the nasty side effects of vomiting and diarrhea tonight. The problem is that He is so weak that he does not have the energy to sit up to throw up. He is tired of us cleaning him up and messing with him, but he has to be cleaned thoroughly after each pee or diarrhea because the chemo is coming out and it could burn his skin. It has been a long hard night here in 7 central, but thankfully Pops is here with me. Mike is bringing up the other cuties tomorrow and I cannot wait!!! This week has been so hard and emotional and the week has caught up with me tonight.

Cancer is hard enough, but this tough chemo regimen is brutal. His body is so weak and fragile that he is struggling tonight. We know that we must get through this and that we will never be alone. God knows how weary we are and He is also aware that Davids little body is worn out. I am sure he will also forgive me that I lost my cool tonight cleaning diarrhea up for the hundredth time. I just keep remembering

For I know that plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

God truly has a plan and we are trusting tonight in his plan. This tough chemo regimen is just part of a bigger plan. Instead of whining about how hard this is, we are simply chalking it up to part of the plan. We are so thankful to the Lord who protected David from harm this week, and we are begging Him tonight to strengthen his skinny, tired body. Thank you for the prayers that got us through this long day. hopefully good night from 7 Central!

Emmanuel

Today we have been singing the praises of our Mighty Lord!!! Today when the oncologist came in for morning rounds she clarified the type of bacterial infection David had. The bacteria was strep pneumonia which frankly is pretty rare and dangerous. The fact that our baby did so well with the antibiotics is truly miraculous. When we were first educated about potentially life threatening infections this one is what they meant. We just know that our Lord protected our boy from serious harm. The doctor gave credit to our vigilance for the reason he did not end up inthe PICU, but Mike and I know whose hand was involved. It also makes sense why he was so sick. Praise you Lord for protecting our baby!

We have said so often that God is here with us. We have felt his presence so strongly with us. Today when the doctor shared with us what could have been this week with this infection, I bawled happy, thankful tears. He is truly our Emmanual-our God is truly with us!!

The plan is that if Rock Star continues to improve then we can go HOME this Monday on IV antibiotics!! Home is my favorite word. This type of infection is so serious that he will need lots of followup antibiotics. We will have to return next Thursday for either a quick port change or to check in again to the hospital for another intense five day chemo regimen. The oncologist this morning said that his white blood cell count will have to dramatically improve to start the five day cycle again on Feb 2nd. So depending on his strength and whte blood cell count, we will return here for a five day regimen again on either Feb 2nd or 9th. Today is week 9 of chemo and today was his lastday of radiation!!!!

Thank you for praying us through this day. Just know that we are singing happy praises to our Jesus who shielded David from a potential catastrophe this week. "Oh how he loves us" just continually is going through my mind today as we give glory to our Lord! I also got a treat today-starting today parents who have children on the floor get a weekly chair massage. It was such heaven to have the knots massaged out of my weary and tense muscles today. God is so good. Smiles from 7 Central!

Wednesday, January 25, 2012

Q & A

Clearly I am not doing a good job explaining this because I have gotten lots of questions via Facebook tonight about David's treatment. I love that you all are so worried that he is not strong enough for a double chemo and radiation tomorrow:) The doctors have agreed that he is stable enough to be sedated early tomorrow morning for radiation. This is the last radiation for his lungs, so we want to be done! We love the staff at the cancer center but after 8 radiation sessions for his abdomen and now 8 lung sessions,we are ready to bid them farewell.

After his radiation he will have a little rest and then he will receive Vinchristine chemo here in our room. It is simply a IV push and this is a "lighter" chemo week. He often does not get too sick from Vinchristine only. The blessing is that they can do some painful things such as a GCSF shot and change his port needle while he is sedated. We take advantage of every sedation to get hard stuff done. He has to be sedated for radiation because he, like all children, cannot stay as still as they must for the treatment.

The oncologist tonight clarified the type of bacterial infection he had. It is a huge word that I could never say much less type. Basically the infection came from one of the mouth sores. We think he got the mouth sore from the intense five day chemo we received last week while inpatient. He is due for another five day intense inpatient treatment again onFebruary second. We are not sure if his body will be strong enough to handle that again, but she did reassure me that then dose will be lightened some next time. The doctor feels that his Down Syndrome affected how hard this chemo has hit him because his immune system is already a little more fragile due to the Down Syndrome.

I hope this clears up questions and I think it was so sweet to see several frantic messages about David being too fragile for treatment tomorrow. We love that you all love him and are keeping us all in your prayers. Our Jesus has been so faithful and loving. Good nght from 7 Central!

Our Day In Pictures:)

David has definitely turned the corner on this nasty bacterial infection. He is still weak and sick, but the fever is down and the diarrha has stopped. He has taken a few sips of Gatorade and has eaten a few bites of oatmeal. The doctor has ordered some nutrition to be given to him through his port, which is okay with us.

Today he was finally able to sit up and interact, so we took him on a wagon ride to see Haley.


I love this Daddy/son picture:) We is really too weak to walk on his own, but he was thrilled to get out in the wagon. He has complained a lot about back pain today, and one of his medicines has caused rectal itching, so he has been a little uncomfortable at times today.

He was able to stand up for a few minutes and shoot basketball but that wiped him out:) It is so good to see him out of his room!


After Haley finished preschool she and David played ball in the floor. Both are connecred to lines and it is hard to keep their lines from getting tangled! Ha!


They both got pretty tired so Mike and I loaded them up in the wagon for a ride around the floor:) Their lines got tangled but we had such fun.


Today has been a much better day for David, so of course it has been a better day for us. He is on schedule for radiation and chemo tomorrow, so we just pray that his body is strong enough for a double whammy tomorrow. I am glad he is getting radiation because tomorrow his port needs to be changed and I am glad they can do it while he is under sedation. It has to be changed weekly.


Thank you dear friends for the love:) We feel it here in on 7 Central:)

Wednesday Morning Update

Good morning friends and family from 7 Central. We just met with the Oncologist and wanted to give everyone an update. First, thanks for the prayers for D-Rob (one of his many nicknames). He is starting to turn the corner. He is more alert, talkative and insistent :-) He was not as sick last night and seems to be responding to the antibiotics. He was restless and is not comfortable so he is a little grumpy. We are starting to get used to sleeping with one eye open because he is fairly needy with everything right now. He complained of his back hurting last night and everyone feels that is related to being in bed so much and not really having gotten up and moved in 3 days. He has been in isolation with many super precautions being taken by everyone to keep him from getting sicker. Hopefully today he can at least leave his room for a few minutes. It would do his spirit some good to be able to see his buddy Haley.

Here are some things we know:

He has a gram positive blood infection.

His white blood cell count is still very low

His fever has been much lower

He is still not eating or drinking

They are going to give him some nourishment through his port

He is on two different drip antibiotics

They plan to give him his last radiation in the morning

He will get Vinchristine chemo on Thursday as well

He participated in school this morning when the teacher came to his room to work with him


Laura and I are both so thankful for the incredible care he has been given here. Many different folks have worked with him over the last two and a half months and they are all so good to him. He is in great hands and this is an amazing hospital.

Thank you for your continued prayers for D-Rob

Tuesday, January 24, 2012

Our Day in Pics :)

Today has been an emotional day for me, and Rock Star has not felt that well today. We are seeing some improvement in him, but when you have a bacterial infection in your blood you feel pretty yucky.

We had a bright spot today when David got to open a few presents from his Tom and Mary Beth Graham present stash :) They wrapped lots of presents for David so he gets to open one a day while he is in the hospital. We played catch up today because he felt too punky yesterday to open one:).
When he has been awake today, he has watched Netflix movies in his bed on the iPad.
But he would often fall asleep before the movie got through. Bless his heart:) The teacher did come by and read to him bedside today since he was too sick to go to the classroom.
Poor Pops was such a trooper and was up with David last night when he was so sick. He thankfully took a little nap before heading home.
Our poor pale baby. He has been such a sick boy the last few days. We were told today that we would be here another 7-10 days inpatient for him to get over this nastiness. Bacterial infections in your blood are dangerous and super scary. Sadly this can happen more while he is on chemo. His white blood cell counts are purposely bottomed out with the chemo, so he has nothing to fight infections.
Sarah Martin sent out this quote today to our women's church circle and I loved it so much that I put it on our dry erase board. I sometimes put bible verses on our dry erase boards to keep our focus on Jesus. This has been such a hard day for me emotionally knowing that we will be here another week at least and then right after that we are scheduled for another 5 day tough chemo regimen that got him sick to begin with. Sigh.
I love this sweet picture of my Dave and Pops. We try to cuddle him in the chair to give his body a break from laying in the bed. Hospital beds are not always super comfy, and he has been so achy today that we have held him close and snuggled.

Mike is here now with us:) We are so appreciative of all the emails, texts, calls, facebook messages, love, and prayers. We feel the love tonight. We also know that our Jesus is here with us whispering words of encouragement to us. Good night from 7 Central:)

Tuesday morning update

Poor Rock Star. He is certainly not feeling like jamming on his guitar anytime soon. Poor baby has a double whammy going on that is making him THIS sick. First off he has a bacterial infection which would explain the fever and the diarrhea/vomiting. The cultures that they took yesterday grew a bacteria which his broad spectrum antibiotic will treat. Also, he has a mouth sore from the chemo which means that if there is a mouth sore, then there are probably more in his GI system. No wonder this baby is so sick. Please pray for our brave Rock Star. There is a little good news in that the CDiff was negative.

I was blessed and got a full nights sleep at Camp Pendleton. Pops insisted that I get some rest since we had had such a late night the night before. I Went to sleep before 9 last night. We have to pace ourselves because this is truly a marathon. Pops was on night duty with Dave and unfortunately they got very little sleep. Dave had terrible diarrhea overnight from the bacterial infection. I think that they got very little sleep last night. We are so fortunate to have such family help. GG is keeping Hope and Kyle in Marion, and Pops is here with me. Mike is coming back to UVA today. My grandmother is also in Marion helping out. She is Hope's BFF until Dave returns.

Today is a day of rest and healing. No radiation today because he is simply not up to it. Thank you for the prayers and I will update later this afternoon. Peace from 7 central.

Oh I forgot to update on Haley and her family. She is still here waiting on her heart. Three days after Christmas their home burnt down back home. They lost everything. While they sort out the insurance mess, they have basically moved here. Her older brother enrolled in school here and they were living in a hotel. The local news ran their story several times and someone here in cville is loaning them an apartment free of charge. We are right down the hall from them but Dave has been too sick to play.

Monday, January 23, 2012

Rock Star update

Today has been a day of rest for Dave. His fever has been up and down and he has slept a lot. He received platelets and antibiotics, and he remains on fluids. We definitely see that he is a tad bit perkier this evening, but he is certainly not ready to get up and play. They are going to hold off on his last radiation until Wednesday until he has had more fluids and his temperature remains more stable. He is certainly a tough fighter and we are so proud of him.

We enjoyed a nice visit from Jonathan. He unfortunately witnessed David getting his daily GCSF shot. Those shots are stressful on us all. He has sipped a little apple juice and had a little popsicle today. He has a pretty ugly looking sore on his tongue which makes eating and drinking pretty painful. Please pray that this sore heals quickly and that his white blood cell count comes back up so we can stop these darn shots.

Today's praise song is Forever Reign and I just keep singing

My heart will sing
No other name
Jesus, Jesus

As I cradled my sick, feverish, moaning child I just sang that song over and over in his sweet ear. Thank you for the prayers and love that have carried us through this tough day. As we walk through this dark valley we just keep singing about our faithful Jesus who has been our Rock.

The plan

I just met with the oncologist and she confirmed that David has an infection and that is the reason for the fever. He will need a platelet transfusion because his platelets are very low. This was to be expected due to the last chemo regimen last week. It is intended to bottom out those cells. His radiation was put off until tomorrow until he is more stable in terms of his fever and vitals. We are still in the PICU but he is stable enough to go to the floor when a room becomes available.

As parents he looks very sick to us. He is in and out of sleep and his fever is up and down. The oncologist said that she is comfortable with him coming out of the PICU because his vitals are improving. She reassured me that even though he is super sick looking now, with fluids,platelets, and an antibiotics, then she thinks he will bounce back quickly. She expects us to be here at least until Thursday. There are criteria will have to meet to get to go home.

Thank you for all your prayers. I have the best song In my head called forever reign by Hillsong. I have heard It a lot at church and then it was on this awesome CD I got from a sweet blog reader in Salem. Check it out on YouTube, but my favorite line is

You are Peace
You are peace
When my fear is crippling

He is truly the Peace that has gotten us through these last hard and scary days. Thank you dear friends for praying for our sweet Dave and for Mike having to leave this morning for home for important work meetings. Peace from the PICU!

Morning update

Good morning from the PICU! Sweet Rock Star is feeling pretty sick this morning. He has a fever of 103 which is a little concerning. The nurses just drew blood for cultures but in the meantime he will start on an antibiotic. We have also discovered that he has several mouth sores on his tongue which is common but very painful for him. The oncologist feels that he probably has sores in his GI track and that is why he has had the upset stomach and vomiting. He is too sick for radiation, so we are waiting for the oncologist to come by and meet with us this morning. Please pray that his infection gets under control and that the mouth sores go away. He is so sweet and snuggly this morning but he definitely feels punky. Thanks for the prayers.

Midnight update

We are finally settled here in a PICU room tonight. What a scary day but here is what we know as of now:

We are in the Great hands of the Ultimate Physician and we are trusting in His plan for our family.

David's blood sugar was low tonight and he was dehydrated. His white blood cell count was extremely low which is to be expected.

We noticed tonight in the ER that he possibly has a mouth sore which would make sense why he has refused to drink. Mouth sores are common during chemo unfortunately.

He has his last radiation session tomorrow so we are going to try to rinse his mouth good while he is asleep to help the mouth sore.

Kyle is in Marion with the Osbornes so he can go to school tomorrow.

GG and hope are at Camp Pendleton tonight but it is nice to have them close.

Mike has to head home tomorrow for a budget meeting.

I am tired tonight but I am just watching our boy sleep. He scared us so much today because he could not stay awake. He would try to wake up, but then he had a hard time keeping his eyes open. He was so pitiful, so we know we are where we need to be. This is so scary but we continue to lean on the everlasting arms of Christ. I have been so scared this weekend between our home health duties and his deteriorating health that I have been desperate for Jesus. His peace is like no other. I am sitting here watching our sick boy sleep, and despite how scared we are, there is Peace. Peace is knowing that we serve a mighty God that will never abandon us or betray us and that He is holding our precious boy in the palm of His hands tonight. Goodnight from the PICU.

Sunday, January 22, 2012

Wild Weekend

Well, this weekend has certainly not been the relaxing and low stress weekend we were hoping for. Rock Star has been really sick with lots of diarehha and some vomiting. Yesterday he was refusing to eat but still drinking, and this morning he would not even drink. He was starting to show major signs of dehydration so this morning we called UVA pediatric oncologists.

After speaking with them, they thought that we needed to be seen in our local ER (shout out to you awesome folks in Smyth County ER-you all have been so kind to us) for fluids. I took David to the ER while Mike took the other two and headed to Kyle's AAU tournament. Blessedly our quick ER was able to get labs done and a bag of IV fluids adminsitered and we were still on time for the game!!

So we are heading to UVA now. Amazingly Mike is too headed to UVA for a conference! Crazy, but we will call the oncologist when we get to Cville so that they can assess whether he needs additional fluids tonight. He has not drank anything else since his IV, so I am betting they are going to want to get him some more fluids. He still has his LAST radiation scheduled for tomorrow.

This weekend has been incredibly stressful to be a home health care nurses to our baby while watching him be so lethargic and sick. The stress level in our home was high, but we were still able to make it to all three of Kyle's AAU games and cheer him on. Parenting is such a balancing act for sure.

We are headed to UVA now and I will update the blog later with the plan. Please pray his appetite and thirst increase or we will be here a few days. I brought a whole suitcase full of clothes preparing for the worst. Thank you to Mountainview Peds and Smyth County ER for helping us through a tough weekend:) I do have an awesome new praise CD to listen to thanks to a sweet blog reader in Salem:)

Off to UVA again:) Thanks for the prayers and love and I will update later. I pray that the update will include that he has not needed additional fluids:)

Saturday, January 21, 2012

Saturday Update

Our Rock Star is feeling pretty sick tonight. Last night and early this morning he had diarehha and threw up. We are finding that following radiation he is pretty punky and struggles to regain his appetite. We are really worried about his appetite as he is gradually losing weight over the last couple of weeks and he has very little extra weight to lose. Please pray that his energy and appetite return to normal soon. Mike went out to all three drugstores tonight looking for Benecal supplement which we can add to what he does eat to boost his calories. Internet here we come. We are so afraid that he will have lost more weight this Monday and the feeding tube will no longer be optional.

Today we administered our first shot while he was awake. It was really not to traumatic and he handled it well. We used Kyle to help hold and stabilize his feet. To be so skinny the boy is strong!! I also tried to flush his line with Heparine, and lets just say that was not one of our finer moments. The heparine would not push out of the syringe so when I pulled back on it, blood came out of his line. It freaked us out of course, and we visited a local pediatrician's office who graciously and expertly helped us. Thank you Mountainview Pediatrics for being open and willing to come to our rescue!!!!

We are pretty stressed out tonight but we are trying to work together as a team and turn his eating over to the Lord. I look at pictures of David pre-diagnosis and it shocks me how healthy he looked then. He is now so skinny, pale, and bald and it is so hard to see him without energy. Today Ashley and Jason bundled him up and took him to Hungry Mother to throw rocks in the lake:) They said he enjoyed it.

Ashley and Jason hung out with David while the rest of us went to a basetball tournament in Fort Chiswell. I knew David was in good hands with them, but they could not even get him to eat. They offered him everything under the sun and he would not eat. We are guessing that he is nauseous and that is why he has such a food aversion.

We went to cheer on Kyle and his teammates in a basketball tournament today. They did well and won both games. We go back tomorrow afternoon to play in the semi-finals. Basketball is such a fun and great diversion for us both. We love our sweet team and all the families involved.

When we got home tonight we saw that David had received a special autographed hat from former Hokie David Wilson. David loved it and the Graham family gave David a bag of presents so he can open a present a day while in the hospital:) How sweet and thoughtful.

Days like today it seems that David's cancer is this huge and overwhelming thing in our life. Days like today it is so easy to forget that our God is bigger than all of this. We have both been stressed out today with David's care, but blessedly we are a team and we are in this together. We are not alone and our God is bigger than any feeding tube, number on a scale, or even stupid cancer cells. I am going to take a cue from our Rock Star and keep singing:

Our God is Greater
Our God is stronger
God you are higher than any other
Our God is healer
Awesome in power
Our God, Our God

Good night from Camp Robinson!

Friday, January 20, 2012

H*O*M*E!!!

I am so thankful to be in my own home. This last nine day trip to UVA was rough on this Momma. David handled it with the same grace he has handled everything, but not so much for Momma. I was restless and grumpy this trip. The only thing that seemed to calm my nerves was sleeping or working on my Jesus One and Only bible study by Beth Moore.

This trip was not too painful for the Rock Star, but it was grueling on his little 48 pound body. He is worn out tonight and is snuggling with his Kyle and watching Kyle play Xbox. You know he is tired when he is content to watch and not grab for a control to play himself.

I am now a home health nurse by default since we were sent home with Hepron and GCSF shots that I must do. His port was allowed to stay accessed this weekend since we have to return to UVA on Sunday, so since we promised to flush it with Hepron to avoid clotting we got to let it remain in:) Once again let me applaud you medical folk for handling wiggly unhappy children while administering shots:)

Tonight we are just happy to be together. Mike had a dinner tonight to attend, so it is just me and the kiddos. I never thought I would say this, but it feels so good to do laundry, prepare food for my family, and just be a normal Momma.

This week I was certainly homesick and struggling with being away so long again. But it seemed that God knew I needed a pick-me-up and two days this week when we walked into the cancer center there were packages waiting for David. One day he received a cute hokie blanket made by some Orange County girls, and another day we received a big goodie bag of things from Beth Carr Baptist. Those gifts made us smile and they were such a sweet reminder of all the people that are approaching the Throne of Grace on our behalf. This Momma would have gone crazy this week without Jesus and the knowledge that we have prayer warriors lifting us up.

David and I have listened to lots of praise music this week because music does minister to me. There is nothing better than singing praises with your child. Thank you sweet Jesus for this "normal" nothing night together:) Enjoy your weekend and do not take normal family moments for granted! The nightmare has taught us to value every normal, boring family moment because life can certainly change in the blink of an eye. Happy Weekend from Camp Robinson!!!!

Thursday, January 19, 2012

Dear David

Dear sweet Rock Star,

This has been a tough week on your Momma. We have been here at UVA for 10 days now and I miss home. Then I stop whining and I think about all that you have endured these last two months and my heart swells.

We are so proud of you. You are such a brave warrior and we are so proud to be your Mommy and Daddy. We have watched you endure a hard surgery, lots of chemo, abdominal radiation, lung radiation, and CT scans. You have never complained, whined or cried. You are a star patient and lots of doctors and nurses have fallen in love with you.

We cannot wait in ten or twenty years to pull out all the get well cards, signs, and such to show you. We cannot wait to tell you stories of your bravery as you fought cancer as a child. we have packed up with care every card we have received so we can show you one day again so we will all give glory to God for getting us through the nightmare.

You have been a reminder to us all that God is worthy of praise regardless of circumstances. Often when nurses would enter our room they would find you with your IPad singing praises to our faithful Lord. You have opened so many hearts to Jesus without preaching one sermon. You are a reminder that even little ones can serve the Lord.

You are our hero. We know sweet boy that God has big plans for you. We know from the bible that God looks upon the heart, and that is great news because your heart is so big and giving. Your smile lights up the room and your stubborn spirit is no match for cancer.

You are also a constant reminder to us all that God makes no mistakes when he blessed you with your designer chromosomes. You are fearfully and wonderfully made by our Creator and we think you are perfect. You make us want to be better people and you have reminded us that matters of the heart mean more than material possessions.

We know tomorrow you have radiation, chemo, and a blood transfusion before we can head home for the weekend. That sounds like a big day, but

Wednesday, January 18, 2012

Another curve ball

Today David had radiation at the cancer center. After his treatment the radiation oncologist clarified that David is suppose to get 8 treatment, so it appears that we will have to return Sunday evening for his last treatment early Monday morning. Sigh. Not exactly the news that we were hoping for considering the fact that we will have to return on Thursday for weekly chemo. I was so sad to ask for a long term sub for preschool, but considering our grueling radiation and chemo treatments ahead of us, that was the right decision. We are at the mercy of the doctors and treatment protocol to get our sweet boy better.

After radiation and chemo Friday, we will return to Marion for the weekend. I cannot wait to watch my oldest play hoops in an AAU tournament and get some Hope snuggles. Sunday afternoon we will return for his early appointment Monday morning. Blessedly he has had a great day today!

Mike and Popos have switched places so David is so happy his Pops is here. He actually ate a good helping of fries from Five Guys today!! My boy has good taste for sure. Pops will stay with me until Friday because I get nervous driving David alone after a treatment in case he gets sick.

We are so ready to see our home again and have all five of us under one roof! Thank you dear friends for praying us through this long and hard process. We are so thankful for your love, prayers, and encouragement.

Tuesday, January 17, 2012

Tuesday Update

Today our Rock Star has felt pretty punky. His radiation went very smoothly and Mommy did okay giving our first shot. He was actually awake when I did it, just groggy after his radiation. I was blessed in that the radiation nurse was with me and he coached me through it. God bless all you medical folk-it is certainly a calling from God. I will do what needs to be done for Rock Star, but I will be as thrilled as he will be when we are done. Pray that his white blood cell count returns to normal QUICKLY so we can stop these shots:) My hands were shaking so badly:)

After radiation, Mike had to head to Richmond for a press conference for his job. Basically all the superintendents come together to present their ideas for the state budget. To get out on this warm, sunny day we rode with him. While he was in his meeting I decided to take DAvid to the Children's Museum of Richmond to play for a few minutes. Great idea, but frankly he was too wiped out to play. It really hurt my heart to see all these other kids running and playing and my bald, skinny child did not have the energy to climb to the top of the tree house to slide. I just had a little pity party moment.

I know I have mentioned this before, but David is obsessed with David Crowder and wants to watch his videos all the time. Today in the car, we looked back and saw David singing his heart out with Itunes and had his hands up praising God. He had just thrown up on the side of the interstate and just five minutes later, he was praising our God. How can I have a pity party about our circumstances when my brave Rock Star continues to sing praises to our God?

He has endured so much in these two short months, and he always has a smile on his face and a praise on his lips. He is amazing and we are so proud to be his parents. God has big plans for this Rock Star!! He has slept most of the afternoon today and he is really lacking energy and appetite today. Considering all the radiation, chemo, and early morning radiaiton appointments we have had it is no wonder.

We are counting down the days until we return home. We received a very special gift in the mail today which will help us stay better connected. We are blown away by your generosity:)

Thank you dear friends for your calls, texts, emails, love and most importantly prayers. Three treatments to go until we get to head down Interstate 81 to our other babies:)

Monday, January 16, 2012

O Praise Him!!

David is truly obsessed with David Crowder. We have listened to his music all day today, and he is obsessed with seeing pictures of Jesus. There is a video on YouTube from the Passion of the Christ movie that David loves. We love that our boy loves his Jesus as much as we do. I have missed my other babies so much, but I have so enjoyed my Dave snuggle time.

The exciting news is that I am writing tonight from Camp Pendleton!!! David had such a great day eating so well and drinking so well that after his chemo today they deemed him ready to be an outpatient!!! I take that as a compliment that they know we will push fluids and calories on him, so we are thrilled! He has eaten well today considering he has had both radiation and two chemo drugs. We had some excitement today because we were evacuated during his chemo treatment due to smoke! That was surely a dramatic way to get to leave our room! Ha!

So for the next four days we will remain here in Charlottesville at Camp Pendleton while he has daily radiation at the cancer center each morning at 7:30. Friday we will have to return to the clinic for his weekly Vinchristine chemo treatment and then we will be able to head home!!!! This is week 8 of 25 of his treatments. We just learned that during weeks 10,19, and 25 we will have to return for a 5 day inpatient trip for this regimen again. So it appears that February 2nd we will have to return for another five day inpatient stay. Sigh.

Tomorrow is day one of nurse momma administering his GCSF shots. The next four days I am going to cheat a little and administer them while he is sedated for radiation. I will take all the breaks I can get and we are using thiis sedation for lots of good reasons. Tomorrow while he is still groggy in recovery we will give his mouth a good swipe with his mouth wash to ward off mouth sores from chemo and I willing ve him his first shot. I put the bible verse "I can do all these things through Christ who gives me strength " on our dry erase board in our room to remind me that we can do all these things with Christ by our side.

Sunday, January 15, 2012

Praise

Today has been long but wonderful. The room restriction is hard for a social dude like Rock star, but it has given us a lot of sweet Mommy and Dave time. To entertain him today, we have listened to lots of music on Youtube. He loves David Crowder as much as I do so we listened to the song Praise Him over and over. I love the video so much and tomorrow I will put it on here, but the video shows this guy walking through a dirty city and singing praises to God.

That video hit home to me because just like that guy, I am somewhere I do not want to be. Hospitals are not glamorous and do not lend themselves to praise like a beautiful sanctuary would. Today Dave and I were prisoners In or own small room. Looking around I see lots of tubes, wires, a full urinal, and a IV pole. But because the Lord has been so faithful I have to continued to sing His praises. In the middle of the video the guys stops and gets down on his knees in a dirty, busy street and belts out O Praise Him! Dave and I did just that today. We just sang our favorite praise songs and it was so uplifting to me. God knows how much we love him and that we have totally turned this nightmare over to him. He has brought us to such a place where we have to full depend on Him because we alone are not strong enough to handle this nightmare.

Today the doctor talked to us some more about these GCSF shots. Yikes I am totally overwhelmed, but basically this chemo regimen will wipe out David,s white blood cell counts, so he will need daily shots for up to 14 days to return his levels to normal. Have we mentioned that we are educators and not nurses? Tomorrow our nurse is coming to let me practice on her!!! I am totally stressed, but I keep putting my trust in the One who is capable of handling this all.

Thanks to the nightmare:

We have witnessed first hand the presence of God. He has never left us for one moment.

We both realize that silly stuff and material possessions are a joke. Only the prince of peace can bring you utter peace. A clean house or new stuff cannot provide you the peace that passes all understanding.

That family is everything and do not waste a precious moment with your loved ones.

That it isvital to know your Jesus intimately so when you are facing hard times you know how big, mighty, and powerful He is. My new pink sassy bible is looking rough already because I have scoured it looking up bible verses that people have sent us.

Wherever you are and whatever circumstances you are in, keep praising God.

Weekend on 7 Central

We have had a fun weekend here in 7 Central. Here is a sweet picture of Dave and Miss Haley. They had such fun playing in the hall together until our oncologist came to tell us that DAvid has to remain in our room for our entire stay:(

Don't you love her cowboy boots with her pj's?! Neither one wanted to get dressed, so they had a pj party in the hall. Sadly; however, DAvid is on room restriction. There is major construction going on in the hospital and this week they are cleaning the ducts in the hospital and he has to stay in our room with the hepa filters for his health. That is sad for David because he is so social. Mike texted me this morning that DAvid and Haley were waving at each other through the windows:)


Here is a cute picture before the room restriction. It makes me sad but there are lots of sick kids here on the floor. THis is the fullest I have ever seen this floor.


Here is one of his chemo drugs. The two he is on now are slow drips through his port. He will have chemo today and tomorrow and then thankfully he is done with this cycle. Please pray his appetite returns:)


We had lots of fun visitors yesterday and here is David with Matt. Matt is Ashley's boyfriend and we were so thankful that he and AShley were willing to bring us Kyle and Hope yesterday. I had a fun sleepover in the condo with Kyle and Hope last night:)


Cathy and Stacey Timmons came for a visit and she was patient enough to play with them:)


We were excited to see Mrs. Kathryn the music therapist:) We had lots of hard requests for her and she is such a good sport. She brings the music for Big Green Tractor each time:) When David saw her he willingly put down the Ipad to sing with her. We all got instruments to play along.


Mike and sweet Hope. She is so cute with David. She is really into all this medical stuff and she says "Dave u need to fwush your wine?" It is so cute that she knows that he needs to have his line flushed and she always ask him about his chemo. We think she might be a nurse or doctor one day. Or maybe a CEO because she is pretty bossy! Ha!




My sweet boys snuggling in the bed. David gets very sleepy a couple of hours after chemo and likes to snuggle.


We took Hope and Kyle out to dinner last night at Baja Bean (yummy!) while Matt, Jason, and AShley watched David. We have not been able to get him to eat anything but they managed to get him to eat several things while they were in charge. When I downloaded my pictures this morning I found lots that they had taken while we were gone. I love to have surprises on my camera!


Ashley and the men in her life:) I love it!! David loved seeing all his friends yesterday and was in heaven with all their love and attention. We were so thankful to see them and have a family weekend here on 7 Central!


Mike is heading home today with Kyle and Hope. He has a meeting at work tomorrow so I will stay here with Rock Star. He will have chemo today and chemo and radiation tomorrow. As we finish this cycle we ask for your prayers that DAvid will eat! Please! Also please pray that his five radiation treatments this week will go by quickly so that we can get home this Friday. Home and Jesus are my two favorite words right now.


Today I look forward to a quiet, snuggly day doing some reading and bible study. We just learned that we have to return in three weeks for another 5 day inpatient stay for the next five day chemo cycle. Sigh. We also learned that today the nurses are going to come teach us how to give the GCSF shots. Sigh. I am turning this over to the Lord because those two things could stress me out. He will need daily shots for 10-14 days until he white blood cell counts return to normal. Mike and I are not medical people at all, but we will learn and do it for our Rock Star. Thank you prayer warriors for the love:)

Saturday, January 14, 2012

Dave Update

Thankfully David is feeling much better this morning. Last night was a rough night for our brave Rock Star with lots of throwing up and dry heaving. This chemo regimen is brutal on our boy. He continues to amaze us with his strength and spunk despite feeling pretty yucky.

Our room is not large at all, but it has a cozy window seat and a great shower. Anyone who has spent any extended time in a hospital knows that the shower can be great or really lousy:) The little things like a cozy window seat and great bathroom make a big difference:)


Yesterday Casey and Angie Blevins came to visit us while they were here in Cville. David was thrilled to see them and he got out of bed and came to snuggle with them in the window seat. They watched lots of Beauty and the Beast videos with him and they were patient and sweet with him. We also had some other sweet visitors who were heading to down the road and stopped in to see us.


Check out David's new shirt from Fly Duds on Etsy! We have quite a collection of VT monogrammed gear to wear here in enemy territory:) We just love this website for cute and monogrammed shirts:) http://www.etsy.com/shop/flyduds?ref=ss_profile



Before David starting feeling yucky yesterday Mike did some school work with David. Amazingly David gets excited to do school work and his teachers were so great to put together some stuff for us to work on.


We really feel like we are in a snuggle cocoon here in room 7141. The oncology patients get a private room with these new and special hepa filters to ensure good air quality. To make sure these filters work properly, there are THREE doors to get into our room and they all have to be shut in order for the filter to work properly. We really are snuggled together here in this cozy room.


David is scheduled for three more days of this intense chemo. Please pray that he does not continue to get as sick as he did last night. This is a tough regimen for a little skinny guy and we are constantly worried about his weight. His appetite stinks right now which is understandable considering how much chemo he has and will receive, but we are worried about his weight. His doctor mentioned a feeding tube yesterday and we are really trying hard to avoid this.


We learned yesterday that DAvid will need to receive GCSF shots when we come home and the doctor asked us which one of us was comfortable giving them???!!! More on this to come...


We are so excited that Kyle and Hope are on their way here now. Sweet AShley offered to bring them down to us this weekend and we are so appreciative. Enjoy your weekend and we will stay snuggling here in 7 Central! David's daily chemo will happen around lunchtime today, tomorrow , and monday and then thankfully the chemo will be done:) Thanks for your prayers.








Friday, January 13, 2012

Friday Evening Update

Just a quick update on David. He has had his radiation and his chemo today. He has handled them well. He continues to drink well but is hardly eating.



Here is what the next few days look like: 1. Chemo -- Saturday, Sunday, and Monday. 2. Radiation starts again on Monday and goes through Friday. 3. Mid next week we will be moved to treatments on an outpatient basis. 4. At some point toward the end of next week and extending into the first week or so when we get home Dave will have to have a special shot that stimulates his white blood cells to multiply. He will be on this until his white blood cell count is correct.



Laura and I have had several folks ask what the loss of heteorzygosity means and why is it so bad that David had to get this more intensive treatment. Here is the explanation that made the most sense to me. Each of us have genes that are called tumor suppressor genes. Different genes impact different cancer cells. For David two of the genes that are tumor suppressors for Wilms tumors are no longer working. This means that he has a higher likelihood of relapse and his surival rate drops. Considering his own inability to defend his body from the cancer cells, he has to take this much more aggressive treatment so that the radiation and chemo can do the fighting for him.



We are looking forward to Saturday and seeing Kyle and Hope. We have missed them while we are here and can't wait to spend some time this weekend as a family even if it is on 7 Central.



In a previous post Laura has mentioned a song that I heard on the way here Wednesday night and really liked. The song is filled with several thought provoking verses. The one that continues to rattle around in my brain is "What if the trials of this life are your mercies in disguise." We all have trials in life, some as serious and frightening as the one we are experiencing but there are many more that we all experience periodically. Any of us could be facing an important life decision for ourselves or someone else, we might experience the trials of our workplace, or a struggling relationship. I think the stress of these situations often have us praying more frequently and by doing so drive us closer to God. So whatever trial you are facing or storm you are weathering look for the mercy of our God that might be in disguise.

From 7 Central have a great weekend. We are so appreciative of each of you.

Thursday, January 12, 2012

Blessings

After a long day of radiation and then chemo in the oncology clinic we finally got settled into our room. We are on 7 Central room 7141, and we are right around the corner from Haley in a cute and cozy room with a comfy window seat.

Rock Star has settled in nicely and seems to be handling the radiation/chemo double whammie okay. He is tired but thankfully he has not gotten sick. We have an early morning tomorrow because they will come before seven to transport him back to the cancer center for another radiation treatment.



He has thoroughly enjoyed the new Ipad and here he is on facetime with Jason:) He is so good on that ipad that we have to make sure he is not trying to facetime too late at night-ha! We have facetime "dates" with GG, Pops, Kyle, and Hope several times an evening:) It is so fun to see my babies and hear their sweet voices.


So today Mike and I have just caught up on some reading. I am currently enjoying David Crowder's new book:) It is really funny so far! I love his music so much and if I can wrangle the Ipad away from David I hope to download his latest/last album on itunes.



Here is our sleepy Rock STar watching a Netflix movie while eating his supper. He is really wiped out tonight. He said that I could sleep with him tonight:)




Last night Mike drove through a torrential rain storm to get to Cville. He said it was raining so hard that you could hardly see the lines on the road. He was listening to christian radio on the way down and heard this sweet and beautiful song by Laura Story called Blessings. We both love it so much and the line that gets me in the song is




What if a thousand sleepless nights are what it takes to know you are near.




Mike and I certainly have had a few nights of falling asleep with tears streaming down our cheeks out of fear for our boy, and the "what ifs" have taunted us all night long. Thankfully when the light of morning comes we remember that we do not have to fight this alone. We have our Jesus.




He has never left us and amazingly we are both so much closer to him because of the Nightmare. I do not wish this nightmare on anyone, but I am so thankful for the intimacy we now have with our Jesus. He is so faithful and has truly provided us a peace that we could never have obtained on our own. We certainly do not want to be here in 7 Central again tonight but we are so thankful for the blessings of the nightmare. We know how loved our boy is and that our Savior has lavished his love, grace, and mercy upon us when our hearts have been utterly crushed.




Enjoy this beautiful song and do not forget to look for the blessings in your life. Good night from 7 central!


Wednesday, January 11, 2012

Simulation Done

Today we went back to the Emily Couric Center for radiation simulation. Basically they sedated him to mark him (with a blue sharpie) for the next seven days of treatment. It was not traumatic for him, but he did get sick when he woke up from the sedation. It was pitiful watching him hurl as groggy as he was:(

So the plan is for us to return to the cancer center tomorrow bright and early at 7:30 for his first treatment. His port is already accessed, so they will just give him some Michael Jackson drug in his port and let him drift off to sleep. When he wakes up we will go to oncology clinic to be admitted to the hospital. He will receive his first chemo dose tomorrow. Today they took his pre-chemo blood work and I just got the call that his blood work is good enough for chemo:)

Okay here is a funny story. God must have known that I needed a good laugh today at my own expense. This morning I was walking through the lobby of the Doubletree to pull the car up under the porch/veranda and warm it up. As I was walking gracefully through this beautiful lobby my foot got stuck on a piece of carpet that was sticking up. I twisted my ankle and then in a slow motion kind of way, I staggered across the lobby trying to regain my balance only to slam full force into the glass doors of the hotel. Seriously, do not give me credit for this being a dainty fall. It was not.

I literally staggered across the lobby in slow motion with arms flailing trying to regain my balance and composure only to be stopped by these automatic glass doors with a thud. Of course the lobby was crowded because a business seminar was about to start in one of the conference rooms. Sigh. I am fine but we have all gotten a good laugh this morning. The manager was wheeling out a wheel chair and yelling for someone to call 911 before I could stop him! Ha! He thought my tears were tears of pain, but I was hee hawing at myself! Thank you Lord for reminding me not to take myself too seriously:)

So David is resting now watching a Netflix movie on the Ipad and I am nursing my sore ankle and my pride:) Good afternoon from Camp Doubletree!

Tuesday, January 10, 2012

The Day

I am so ready for this long and emotional day to be over. I am ready to snuggle with my sweet Rock Star here at camp Doubletree and read my new David Crowder Band book (thank you Pattons!)

Today was long, emotional, and very stressful. As a Momma my nestng instinct kicked into high gear and I put all this pressure on myself to get everything in this house done. Granted my house is spotless, but I am not clear why I put so much pressure on myself. I even washed every sheet in the house and organized my closet???

Then I put all this pressure on myself to leave my classrooms in excellent condition with a ton of lesson plans are prepped and ready. It was so hard to leave my preschool kiddos today knowing that it will be a while before I am back.

Poor Mike called me mid-afternoon and I was so strung out and stressed that I bit his poor head off. This Momma took on way too much today and got my eyes off of Jesus. I got so caught up in details and "must dos" that I took my eyes off of the only One who can give me comfort, peace, and grace. Cleaning my closet or washing all my sheets certainly did not give me the peace that passes all understanding.

Around 3:00 today as I was getting ready to go pick up Kyle the school nurse called me. She said that Kyle was "sick" and had a stomache ache. Mother intuition told me that he was fine but that the stress and anxiety of our family being split apart one more time, got to my buddy. When I pulled away with just David I was bawling, Kyle was crying because he was "sick", and Hope was bawling.

Needless to say I cried halfway to Radford on my way to pick up Pops. I certainly have not felt peace today. I have felt self-pity, fear, stress, and anxiety because I took it all on. For some bizarre reason today I got caught up in the "must dos" and "what ifs" and forgot to turn it over to the Lord.

He has given us so much peace and grace through the entire Nightmare and today I put the weight of the world on my shoulders and lost it. Today was a terrible day and I was just so emotional and sad.

Then on the way to Cville, David chose to ride in Pop's jeep instead of my SUV, and so I had time alone with my Lord. I prayed and I sang. That sweet, quiet worship time was exactly what I needed to give it ALL back to Him and allow Him to carry the burden. This is so huge and so scary that we cannot carry it alone. We must turn it over to our Lord and cling to Him and each other so that we can survive.

Cast all your care upon him; for he cares for you. 1 Peter 5:7

He did not say cast all your cares on me Laura except for your "to do" lists or your "what ifs." He has proven to be so faithful and to us during the nightmare and I am so thankful that tonight I can place all my fears, concerns, anxieties, and stress at the altar of the One who cares for me.

Thank you Jesus that you care for us. Thank you Jesus that you know how broken my heart is. Calm my Kyle's anxiety and help his belly to feel better. Settle Hope's nerves and let her have fun with Mimi and GG. Precious Lord please grant Mike your peace as he is trying to juggle it all and carry our family spiritually, emotionally, and fiscally. We commit this nightmare to you Lord for your glory. In Jesus name, amen.

Monday, January 9, 2012

Yikes!!!

Yikes! I received a phone call today from UVA saying that we need to be at the Emily Couric cancer center Wednesday morning for the simulation for David's radiation. That means that we have to leave Tuesday night instead of WEdnesday night which is throwing me for a loop. Because of a budget meeting, Mike will stay here until Wednesday night and Pops will go down with me and David. I just got the call today-whew!

Here is a cute picture of a playdate picnic from the weekend. Kelsey and Morgan came up to play and my little ones had such fun. Kyle went to play with Tanner and it was a fun kid swap afternoon!


David is loving easy mac and cheese right now, so here is the gang having a picnic on our bed. Whatever it takes to get him to eat!!

Because of the Ipad we can now facetime with friends. Face time is amazing because it lets you talk live from one ipod/ipad to another. Now that we have facetime, we can talk when we are away at the hospital with Kyle and Hope here. The Williams family is gracious enough to let Kyle borrow their Ipad so we can face time each night so I can see and hear my children live:)


Isn't this picture hilarious!! If you look on the Ipad, you can see my three in that little rectangle in the top corner and then in the bigger screen you can see Elena and Addyson:) Technology is truly amazing that allows our kids to talk with their friends without a phone across town:) They love it!

This morning we used the Ipad to bribe David to eat:) Kyle took a video of him taking each bite as an encouragement to get him to take more bites:)


My handsome boys all decked out and ready for a rainy Monday. I love this angry birds hat that David got from the Dimits! He wore it proudly today to school:)

After a busy basketball weekend and a frantic packing session my girl crashed on the couch this afternoon:) Bless her heart....I will miss this sweet face while I am gone.


It appears from being on the phone with the oncology clinic that we will check in as inpatients Thursday morning and be there until Friday the 20th if everything goes well. David will have daily chemo (poor baby) and daily radiation for seven days. When I get our room number I will post:)


Thanks prayer warriors for your prayers. Pops and I will be heading back down the road tomorrow evening to get ready for the radiation simulation early Wednesday morning. We will be outpatients Wednesday afternoon until Thursday morning when he will be admitted. Thanks in advance for the prayers:)