Saturday, June 30, 2012

Our Week In Pictures

We blessedly can report that David has perked up considerably since GG, Kyle, and Hope have gotten here.  His doctor is pleased with his progress!!!  Mike and I are smiling because our David is acting like himself. Praise the Lord!  Thank you dear friends for all the prayers, love, and concern coming our way.  Thank you to everyone who petitioned our Great Physician for David. 

Now that we are breathing easier we wanted to share some pictures from the week.  I just asked David what he wanted to say on the blog and he said "I love you, I love you, I love you!"
Here is David loading up in the helicopter last weekend.  Smyth County Community Hospital once again did a wonderful job getting David quick treatment and communicating with our doctors here.  We are so blessed to have such a great local ER.

This is in the infamous picture that got me in trouble on the helicopter.  I thought David looked so darn cute with his stick-on ear muffs that I whipped out my phone to take his picture.  The sweet medics on flight quickly informed that flash photography is not allowed on flights.  Just an FYI:)
I missed several of Kyle's All Star games, and our dear friend Sarah sent me this picture one night after the game.  I love Mike's big smile!

Last Sunday Kyle pitched in the first game of the tournament and once again Sarah sent me a picture of Kyle on the mound in a hot, hot game! 

This is our beloved Dr. Alisanski on her last day here with David.  She is listening to David and he has his stethoscope listening to her.  She has moved to Florida and we are so thankful for the compassion and care when she delivered really hard news to us back in November. 
This picture is blurred, but here are three resident doctors working very hard to make David's oxygen tube into a doggie using washcloths and stickers.  It was so cute and thoughtful:)
During the chest xray, Mike rocked the lead apron:)
Poor buddy he felt so bad during his chest xray:)
Happy reunion with his siblings! They have truly been the best medicine for him. 

Today David has perked up so much so we have encouraged him to walk around to move some of that fluid around.  We made him go to the cafeteria and here is a sweet picture of him and his Daddy:)
Here is Kyle helping David lick the icing off of the cupcake!!!  We love to see him eating fattening food like this!!!  Whoo hoo!!!!!
GG, Kyle, and David out in the courtyard off the cafteria.  Mike is acting like David's drill sargent making him move around. It is pitiful because he is so tired and weak that he begs to go to his room, but Mike makes him because his doctors have encouraged us to get him to move and walk to help with his stamina, fluid, and overall energy level. 
My sweet boys.  Having us all together and seeing David out and walking makes my heart so happy. The victory today is so sweet because the week has been so long and hard.  We give God all the praise for this day where our Rock Star is up, smiling, and HAPPY!!  

There is tons of construction going on around here and my kids found one of those "sticky pads" and they danced and giggled on that crazy thing!!  Kyle yesterday said it so perfectly when he said "Mom David has lost his Davidness"  and we are so thankful that David is getting back to himself:) Praise God!!!! 

This weekend is going to be a weekend of rest and recuperating for our boy.  The plan for now is that he will get his PICC line on Monday at 1:00.  Sadly it is another surgery for him which makes me nervous, but it is a light sedation versus the general anesthesia that he was under Thursday.  Monday he will also have a triple dose of chemo.  We are working hard on resting, exercise, and good eating to prepare for Monday.  We are nervous for Monday, but we have faith in our God as he works through his amazing team here.  We hope he will be discharged by his birthday on Thursday:) Weeks ago when we were talking with him about his birthday he said he wanted to bring his friends here to the hospital for his party, but we hope that he is long discharged by Thursday:)

Dear friends, thank you so much for all the love and prayers this past week.  We keep dreaming of the day this nightmare is behind us.  We want to forget the details of the nightmare, but we want to always remember the lessons of God's faithfulness, compassion for others, and the Lord's unfailing mercy and grace.  Happy Weekend from 7 West!


Friday, June 29, 2012

Friday Night Update

Today has been somewhat better for David.  He has been poked and prodded more than he wanted.  He has had an ultrasound on his heart, kidney, and bladder.  He had a more extensive chest xray and he has had blood culture drawn which we get to do again at 4 a.m.  Just what someone wants to do at 4 a.m.

He had a little energy this morning and we tried to keep him active.  By early afternoon he was pretty tired and napped.  When he awoke from his nap, GG, Kyle, and Hope had arrived and he was excited to see them.  He has had decent energy today and a little of his spunk showed back up.  We cannot wait to see him in full gear again soon.

Here are the health related updates for David.

Heart -- He has some gel like fluid around the heart.  This may possibly take several weeks to get rid of but otherwise heart seems fine.

Lungs -- Still thinking he has some lung issues.  For lack of a medical term, he needs to reinflate some of the chambers that may have been impacted by surgery.  He also has fluid around lungs.  He took Lasix tonight and his output has been good which we hope will rid his lungs of some of the fluid. 

Kidney -- Pediatric kidney specialist was called in.  His creatine was a little high.  After Ultrasound it looks like part of kidney and uretha are distended (hope I used the right word) 

Bladder -- Looked good.

Port removal -- Has not had morphine since 7 a.m. this morning.  We believe this is going well.  His temp got to 100 this evening but quickly dropped back to 99.  We will know in the next day or so whether infections may have been related to the port. Does not seem to have any pain from surgery now.

Antibiotics -- He is on 3.  They have reduced dosage and increased intervals on two of them because they have an impact on his one good kidney.

Chemo -- He is still scheduled for chemo on Monday afternoon.  He will be getting a pic line inserted at 1:00 that day.  We will most likely be here until late Monday or probably even Tuesday.

So what part of his body have I not mentioned.  Lots going with Dave and doctors are working hard to balance all of the different aspects of what is going on. 

Laura, GG, and the kids are resting at the apartment and I am watching an amazing lightning storm from the 7th floor of the hospital.

Laura and I would like to thank you from the bottom of our heart for your prayers and concern for David.  I hope that in the coming days we can report on him and his siblings or friends doing some fun activity instead of these hospital updates.

If you are looking for a great daily email devotional, I would recommend Max Lucado's.  They are short but powerful.  If you have ever read his books, he has a unique writing style and uses powerful images to make his points.  Her is the link to sign up for his email devotionals:  http://maxlucado.com/email/

Friday Morning Update

Rock Star had a rough, rough night.  His oxygen level would stubbornly not stay in the healthy range without needing blow by oxygen.  He hated the oxygen of course, so all night Mike and I had to stay vigiliant about sneaking oxygen on him while he was asleep.  We would think he would be in a nice, deep sleep and sneak it on him and have him wake up flailing at us!  Ha!  Sadly he did get comfortable with his oxygen on around 4 a.m. and then it was time for a blood draw. Sigh.  Mike and I are walking zombies this morning.

We just had a long meeting with his team.  He has way too many issues going on to write about here but here is how you can specifically pray for him today:

Please pray that his oxygen stays in the healthy range without the need for oxygen support. 

Please pray for his lungs.  A chest xray last night showed that his lungs are slightly collapsed around the bottom from his surgery plus he has fluid around his lungs. 

Please for the fluid around his heart that it goes away.

Please pray for pain management today.  The team wants to cut back on the morphine because it can cause stats to drop and for him to be sleepy.  We need him to be up and moving to work out some of that fluid on the lungs and heart.  That is going to be difficult without morphine on board to help his tender wound site.  Also when he is in pain he tends to pant instead of taking big deep breaths which also negatively affects his stats.  Sigh.

This is the part that breaks our hearts, but it seems that his spunk and fight are gone.  He is so miserable that we cannot entice him at all to get up or to communicate much with us.  We are going to try to rememdy that by bringing down Kyle and Hope today.  We pray that their sweet faces will perk him up.  I am tearing up now writing this, but we miss our spunky fighter.  We are so concerned that his demeanor has changed so much and he is so quiet and passive.  I feel guilty now for ever accusing him of being strong-willed because I would LOVE to see that side of him again.  Needless to say our hearts are broken and we are sad and scared.   It has been a long and emotional few days around here. 

That is our update here.  We will update later after his repeat chest xray.  We covet your prayers for our sweet boy. 

Thursday, June 28, 2012

Brutal

The word brutal best describes our day today. This little minor surgery has been very difficult for sweet Dave. His stats and vitals did not like the surgery, so his pulse ox has been very low this afternoon. The good news about that is that we have had such amazing care that our room has been full of doctors and nurses all day watching the monitor. The bad news is that they were so worried abut him that they camped out in here.

The team feels that the wound site where the port was is very tender to him so he is refusing to take dep breaths which makes his pulse ox too low for comfort. Then because he is in pain his pulse rate is up high. Then poor pumpkin spiked a 101 fever during the drama which leads us to believe that the line was infected and some bacteria got released in his body which caused the temp to spike. So the team had to take blood to check cultures and because his port is no longer there for labs to be drawn off of it, then he had to have blood drawn from his hand. Momma walked out on that one. My heart is broken for all that he has endured today and in the past month.

I must just say that we have had a roomful of people in here today that have tenderly cared for our boy. Nurses that were not even assigned to him today came in to help and sit with us. Our resident got comfy in the recliner and sat in here with us for two hours. The level of care and compassion here is unbelievable. When I lost it today the nurses loved on me too offering tissues, drinks, and hugs. This place is amazing.

So now we are resting from the drama of the day. David is asleep with oxygen blowing in his face and I am sitting here thanking God for once again being with us here. I felt him here with us today during those hard hours where we were trying get our by comfortable and breathing easier.

Thank you prayer warriors and friends for praying us through a rough afternoon. They have warned us that this evening he could deteriorate again but at least now we are on top of his pain and his stats have blessedly stabilized.

Much love from UVA!

Thursday Update

Davids port has successfully been taken out!!! We are so hoping and praying that it was the source of the problem and that we are now in healing mode. He has woken up a few times from sedation and did complain about the IV's so we are nervous that it will be a long couple of days until they can come out. Sigh.

The new plan is now to stay inpatient until Monday so that he can get several more days of antibiotics through his IV to clean out all the bacteria in his sweet body. I dread staying here that long, but we can do it!! Before discharge Monday or Tuesday, he will have a triple dose of chemo. I worry that his body is too beat up and weak to handle it, but it must be done to get to the end. All these hospital stays, infections, and chemo have taken a toll on him physically over the last month. It breaks my heart how pale, skinny and sad he looks. He continues to amaze us with what he has endured. I am so proud of this amazing fighter.

My heart has been so heavy and sad over the last few days. I know we are on the home stretch and that God is with us, but I am so sad that our buddy has endured so much lately. I have prayed so hard for peace and comfort for him, and spent time reading my bible for comfort.

God's promises are so reassuring and when I get sad or worried I remember who He is.

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you, he will never leave you nor forsake you.

Deuteronomy 31:6

Despite where we are, despite the pain my child is in, despite my sins and flaws, He will go with us and he will never leave us. For this Momma who feels like I am in a pit of despair this week watching my child endure much, I am so thankful for Gods promises. May god be glorified though this nightmare.

Wednesday, June 27, 2012

The Latest Information

David is having a good evening.  He just finished watching the same Good Luck Charlie episode for the third day in a row.  He is not talking much but is content and does not seem uncomfortable. 

Surgery has been scheduled for 7:30 on Thursday morning.  We pray that this will be part of the solution for his recovery.  At this point we will be in the hospital until Sunday or Monday and are being encouraged to stay close by for at least a couple of days beyond this. 

Please pray that the surgery goes smooth and that taking the port out helps end the fevers, elevated pulse rate, and the emergency hospital stays.

Update from UVA

David and I have had a snuggly day here. His third antibiotic (gentamicin) has helped him perk up! He is still tired and achy, but at least he is not moaning and crying in pain like yesterday. We have snuggled, napped, and got our praise on with David Crowder on YouTube. There is nothing like snuggling with David and singing How He Loves Us.

Mike has been at his conference today here at UVA. We will switch out places later so I can go to the condo to catch up on our laundry. We know that sometime tomorrow David will have surgery to take out his port. We are looking forward to getting that out since it is the most likely culprit for these continued infections.

When he is sedated for surgery, he will have an IV placed in him for his meds and fluids for the next few days plus his chemo. As much as we look forward to getting that port out, I do dread him having an IV. He had one back in November before his port was put in and he did not care for it. We just keep reminding ourselves that we have three weeks left and we can handle anything for three weeks :)

Emotionally mike and I are much better today. Mike is tired from pulling night shift here at the hospital with David and sitting in an intense conference each day here at UVA. He has had such little sleep I am not sure how he is continuing to walk much less think and interact at a conference! He is a tough bird for sure.

My parents have Kyle and Hope and they are doing well and seem to be handling everything well. We hope they can come up after the surgery is behind us. We are also blessed with such a wonderful team here. It has been sweet to see so many nurses come back and visit when They heard that David was feeling better today.

We pray that David feels better and has a better evening tonight. He tends to get a fever and deteriorate around bedtime. We hope that this gentamicin antibiotic will help him rest better tonight and that his vitals stay good so the port removal can go on as planned tomorrow.

After my naps today I am even more pitifully behind on emails and fb messages. Please know that we appreciate every message and they do lift us up even if we do not always respond Ina timely manner. I have personally been sad and discouraged and seeingyour sweet messages, emails, and comments do help so much. We are so blessed to have such a strong support and prayer team behind us.

Update

Our poor Rock Star had a rough night. After midnight he spiked another high fever, his pulse rate and respirations went up, so his doctors started him on a third antibiotic to fight whatever infection we are fighting.

We just met with his amazing team and we are all puzzled why he is so sick again. On one hand we could have a viral infection or he could have another bacterial infection and that third antibiotic they started last night is what he needs to fight it. It is hard to see your child this sick, and it is even harder when we don't know what is making Him this sick. Sigh.

He is not well enough for chemo today so we are postponing it. The plan is for him to still have his port removed tomorrow because the thought is that this possibly could be a bacterial infection again from some bacteria that is hiding out in his port. By taking it out we will eliminate a possible source of all this infection.

We are still watching his monitors closely because his pulse rate is still high. His fever this morning is around 100 which is better than his 102 from last night. He is sitting up in his chair watching Disney channel. He is also still complaining of neck pain.

Thank you so much for your love and prayers. I am sad and discouraged that our buddy is this sick again but I just keep reminding myself that in three weeks we will be done with active treatment. There's light at the end of this dreary tunnel. We also
continue to trust God for his will for our David and our family. We are not alone and that is so reassuring when the question marks surround why this sweet boy is this sick once again.

Tuesday, June 26, 2012

Long day

Wow today has been a very long and hard day. David is miserable and has spent the better part of the day moaning and crying in pain. He says his neck hurts, but overall he is generally achy and miserable. Hs vitals are still good and he does not have a fever, but he just threw up. Please pray for some relief for him.

The good news is that his repeat echo looks like the fluid is somewhat decreased from the other day!! We will take all the good news we can get today. He is suppose to get chemo tomorrow, port removed Thursday and discharge on Sunday when his antibiotics are done. He will have to feel a lot better for this plan to work, but we are keeping the faith.

Mike just finished his conference for the day so he is here with me. Thanks to morphine David is blessedly asleep now in Mikes arms. We are thankful that he has some relief. His team has visited with him many times today and has spent lots of time with us today trying desperately to figure out why this child is so sick. We are suspicious that it is a GI bug due to the vomiting, but we are in wait mode to see how his latest labs come bak and if he perks up some. This is misery to watch a kid with such a high pain tolerance cry and moan in pain. We covet your prayers for answers and relief for him.

New plan

I just met with David's amazing team and we have a new plan. He just had the repeat echo on his heart to check and see if the fluid has changed. We are praying for decreased amount, but no news yet on results.

David will have surgery Thursday to remove the port. The surgery team feels that he needs a few days of a central line holiday while on antibiotics to make sure the bad bacteria will not just move to the new PICC line. That makes sense, and heaven knows we want rid of this bacteria.

Thursday while he is sedated for surgery, they will place an IV in him. He will receive his Friday chemo, fluids, and antibiotics through the IV until Sunday when it is pulled out for discharge. He will go home and then return for one last chemo on July 20th and they will just use an IV that day with no need for a PICC line!!!!!!

The team feels that if we can get by with out putting in another line then it will be healthier for David if he can tolerate an IV for this weekend and an IV for his last chemo on July 20th. I like this new plan because I was stressing about maintaining a PICC line for three weeks at home. I dread this weekend with an IV, but I am sure that Rock Star will roll with it like he seems to do.

Speaking of Rock Star, he is grumpy and over it this morning. Yesterday he was woken up by an EKGand this morning he was woken up by an echo. He is really grumpy and has lots of neck pain. Poor buddy :(

Mike is at work today here at UVA for a conference for the school system. I am so amazed at how he has balanced family and work. He works here in the evenings for hours after David goes to bed. He handles this way better than I do sometimes.

Yesterday I snuck out around 3 and headed home. I got home around 6 and visited with my parents, hope, and Kyle, ate a home cooked meal, and packed more stuff since we will be here for the week. I then headed to Glade for Kyle's 8:00 all star game. For two hours we cheered like crazy for our team and it was such a wonderful distraction for me. We won in a close game and we all are probably hoarse from cheering so loudly. it was wonderful to see a game, see lots of friends, and sit outside on a beautiful summer evening. I then left after the game and got back to the condo at 2:15 this morning. I am definitely feeling my age this morning :)

I will update with echo results when we get them. Kyle and Hope are at home with my parents because Kyle has another all star game tonight. Pops is doing a great job getting Kyle to his games and keeping his stats. Good day from UVA!!!

Monday, June 25, 2012

The plan

I just met with David's team and we finally have a plan in place.

David's heart function is good but he still has the fluid around his heart. Cardiology is going to have to okay his next chemo dose before he can receive it on Friday. Can I just say praise God we have only two remaining treatments?!!!

The port needs to come out. David had another fever last night which means that something is brewing. Thankfully he is covered on antibiotics here but we feel the port is the culprit. Surgery will be hopefully on Thursday to remove that. On Friday a PICC line will be put in for David's last two treatments. PICC lines can be somewhat high maintenance so thankfully we are only dealing with this for three weeks.

We covet your prayers that this fluid around his heart goes away on its own. Maybe his heart is telling us that he cannot handle anymore chemo, or maybe over the last few weeks between chemo and infections he has gotten a little too much fluid???

His pulse rate is still running high but the team feels that the fluid around the heart is causing that.

David had an EKGthis morning, and that was a brutal way to wake up. Poor pumpkin.

Mike is at a conference here at UVA today so Dave and I are hanging out. He is very pale and really is resistant to getting out of bed. We think the fluid around hisheart is making him feel bad.

I am so thankful for my parents who are holding down the fort at home and all your love and prayers. I am really behind in email and Facebook messages, but know that we read everyone and they do encourage us so much. Spending the last three out of four weeks in the hospital is wearing on us all.

We know that we are in the hands of the great Physician and that the victory will be His and oh so sweet when we are done with active treatment. I will update later after our consult with cardiology. Please pray that this heart issue resolves itself. Good day from UVA!

Sunday, June 24, 2012

Sunday Afternoon Update

The good news is that David has perked up some this afternoon.  The not so good news is that Kyle's All Star team lost today. Mike and I are so appreciative of all of our friends that kept us up on the game!!  We were cheering for our boys from here!  They are not out yet and they have round two tomorrow night.

Mr. David is doing better this afternoon.  Since we last updated, he has had an echocardiogram on his heart.  Last night his heart looked a little enlarged on the xray and so today to be thorough our oncolgoist asked for an echo.  The echo showed that he does have paracardial effusion on his heart which means that there is some fluid around his heart.

He had a mild case of this a few weeks ago and it blessedly went away on its own.  That is our prayer again for this one even though it is more fluid than last time.  Potentially this fluid could be a side effect from his chemo.  We are just going to wait it out and see if it goes away on its own. 

Before the echo, Mike and I had decided to agree to surgically remove his port in case it is infiltrated with bacteria.  Now his team does not think it is a great idea to put him to sleep with fluid on his heart.  So we are in wait mode. 

The cardiologist has decided to cut David off of his fluids to try to decrease the volume of fluid going in him to help with the paracardial effusion.  We are pushing the Capri Suns to keep him hydrated without his IV.  So far so good on that. 

Mike and I are trying to figure out the rest of the week.  Amazingly Mike has a conference here in Cville starting tomorrow which helps. We have yet to hear when we will be discharged but David does have chemo scheduled for Friday so at this point we will stay here through the week. 

David and Mike are playing Swamp People on the Ipad.  David is very resistant to getting up and moving so we are bribing him to get up and walk.  The paracardial effusion makes you feel weak and tired, so we know he feels punky still.  He is back on Cefepime and Vancomicin treating an infection since he did have a fever. 

That is the update this Sunday afternoon:) Thanks so much for your love and prayers.  We are so appreciative of all of our friends that showed up to cheer on our pitcher today and for GG and Pops taking him to the game.  Hope had a swimming playdate with Ashley, Wendi, and Brooklyn and I know she had fun with those fun girls!! We are so blessed with so much love and support.

Morning Update

Good morning!! Thank you all for your love and prayers as we try to get to the bottom of why our buddy feels so yucky.  I am sorry our update last night was so "auto corrected" and hard to decipher:)  I love my iphone, but it is hard to update the blog with very little sleep on a tiny phone.

Why we got so nervous yesterday was that David's overall health declined yesterday.  Friday we went to Hungry Mother and played and after that outing David just refused to really speak or get up and move around.  Ashley had him Friday night and said he did not speak hardly at all.  Saturday Mike had him while I went to a swim meet with Kyle and then I took Hope to the pool to swim.  When we got home from the pool, Mike said that David had slept all afternoon and had hardly spoken two words. 

Then David and Kyle went to the basement to play Xbox.  David fell asleep on Kyle while playing Xbox.  Mike picked him up and tried to rouse him, but he was so sleepy-headed that we could not really get him to respond.  I called our on-call oncologist and we decided that he needed labs done because he was probably dehydrated or needed blood transfusion.

When we got to our amazing ER, Dr. "Mo" decided his port needed to be accessed because he looked a little dry and needed fluids.  The amazing Nurse Tiffany accessed his port beautifully and then fluids were started.  We all expected his labs to be bottomed-out and we were shocked when they came back mostly in the normal range except for dehydration.  He looked way better on paper than he did in real life. Once again our local ER did a fabulous job with our Rock Star.  Dr. "Mo", Hope's "blue doctor" (aka Keith Kilby), Nurses Tiffany and Joe were so responsive and kind to us. 

Then we realized that his temperature was rising and we got nervous.  We know that bacterial infections hit him hard and fast and we are still concerned that perhaps his port is colonized with bacteria and that is why he continues to get sick like this.

It was finally decided that he needed to get to UVA quickly in case he deteriorates on the road, and so I decided to call the helicopter to take him.  David and I loaded up and got here in a little over an hour.  The Wings crew was so awesome and kind and they got this scared Momma and sleepy David here quickly and safely.  I will never forget how darn cute David looked in that helicopter with his little stick-on ear muffs over his ears to buffer out the loud noises.  Helicopters are loud.  Very loud.

So we got here and the familiar drill of labs, blood cultures, etc.. started.  The oncologist was concerned that David perhaps was suffering from a rare side effect of chemo which is a brain bleed and that is why he has been so unresponsive.  When we arrived in the ER he quickly had a chest xray and a head CT scan.  We were so nervous about that head CT scan as you can imagine.  When the results came back at 4 a.m. that it was clear we were over the moon excited!!! 

So we are sadly once again back on 7 West with our buddy.  Hope is on a swim playdate today and Kyle is heading to the first round of the Area Baseball tournament to play Abingdon today with GG and Pops.  Mike and I are both sad that we have to miss him pitching today, but Jesus will be with him on the mound today and we are anxiously awaiting updates during the game from our friends. 

Mike met with Dr. Alisanski this morning during rounds and we need to decide about the port today.  We are leaning towards taking it out and puting a PICC line in his arm for the last two remaining treatments.  We both feel that this port is causing this weird but scary sickness. 

The other concern is that maybe this is not another line infection but perhaps viral meningitis.  He is being monitored for symptoms of that.  As of this morning he still has a low grade fever and his pulse rate is still running high again.  We are both frustrated that we are back again but we are so thankful for the great care from our local hospital and here at UVA. 

David looks punky and pale this morning.  This place is not the same without Haley up here!  I did get a text from her Momma that she is doing good at home. We are so happy for them:)

So once again we are in wait mode to see what is going on with our buddy.  We pray for our Kyle today who is pitching in his game at 2:00.  Thank you so much for your prayers and love:)

Quick Dave update

Dave and I made it to UVA via helicopter about an hour ago. Tonight we visited our amazing ER at Smyth County Community Hospital for a quick finger prick because David has been very lethargic and feverish for a day or so. Our ER felt he was dehydrated and needed some fluids so the amazing nurse Tiffany accessed his port and fluids were started. His fever started spiking so after consulting with our oncologist we decided he needed to get to UVA. At first Mike planned to take him, but as the evening went on his fever went up so we decided to go ahead and get here fast via helicopter.

That helicopter ride deserves its own blog post sometime. Wow what a loud ride, but we were in good hands with the Wings team.

We are now here and Mike is driving up with all our stuff. GG and Pops are at our house wih Hope an Kyle. Mike and I are sad that we will miss Kyle pitching in his game tomorrow, but we know all of our family and friends will cheer loudly for our boy. Have I mentioned lately that we are so ready for his nightmare to be over??? Sigh.

I will update again after the chest X-ray comes back and his oncologist has also ordered a CT scan for his head. We are still concerned that his port is infected and that we may need to surgically take it out if it is contaminated with bacteria.

Gotta run to CT scan-pardon typos and grammar!!

Thursday, June 21, 2012

Baseball and Summer Fun

We have had a fun week at the ballfield with Kyle's All Star team.  Tonight is the last game of Area play and so far we are undefeated!!  This is a team full of great boys that love to win!

Our friend, Sarah took these awesome pictures of Kyle in action!
This boy loves to pitch and he keeps his cool on the mound better than his Momma does!
He also loves to bat clean-up!
Of all the pictures that she took, this one is my favorite because I love that expression on his face.  Kyle is our tender-hearted thinker, but he is a competitor and wants to win when he steps out on the field.  I think he looks like his Daddy in this picture with his serious expression:)

Today I had to make an emergency trip to the dentist to get my broken tooth fixed.  Bill Thompson fixed me right up-he is such a sweet dentist:) 

After the dentist the little ones and I played outside while Kyle rested for his game tonight. 
They had such fun with this fire hydrant hose and I love this picture of our crazy girl!!
This time last week this little guy was sick sick in the hospital so it is so awesome for us to see him SMILING and having fun outside.  He looks so different with his glasses off!:)
Our handsome, bald-headed warrior!

This picture clearly captures how close these two are.  They have such fun playing together and she did not mind at all that he was chasing her with that hose!

It is now confirmed that David's next treatment is scheduled for Friday, June 29th.  It should be just a day trip (hopefully) and his last treatment is scheduled for July 20th!!!  My brain is having a hard time accepting that we are almost at the end of active treatment.  We are so excited to think that life could get a little more "normal" soon, but we will always be nervous about relapse. 

When I get so nervous about relapsing I just remember God's grace.  His grace is truly sufficient for us despite what we are facing.  He will continue to walk this journey with us and we are not alone. 

Tuesday, June 19, 2012

Random Family Tidbits

We are so enjoying being at home.  Mike and I feel somewhat caught up around here after our two crazy weeks and we are enjoying Kyle's All Star tournament.  Tonight is a night off from the ballpark so we are all getting in bed early to catch up on our rest. 

I am a reading machine these days.  I have read so much in the last eight months-some of it heavy non-fiction and some were silly light reads.  Right now I am reading this:

It is about a boy, cancer, and God and I find myself saying "amen" over and over.  If you truly want a glimpse into life with a child with cancer read this book.  It is also a book that you must read if you are a christian dealing with something you never thought you would have to deal with.  Yes, it is about cancer, but it goes beyond that and asks the tough questions such as "where is God when _________ happens"  and "how does God let ______ happen."  It is really a great read. 
Last week while we were in the hospital two sweet blog readers came by and brought goody bags for each of our kiddos.  Hope's bag had this crown in it and she LOVES it!
After my wonderfully strange encounter with that stranger in the parking lot I have been looking around for more signs of God in our lives.  We all know He is with us, but sadly I am sure I am too "busy" to notice.  The other day there was this huge yellow butterfly that would not leave us alone.  We had to go inside finally because Hope was so scared of it.  For some reason, this butterfly reminded me of God's unfailing promises to never leave us. 
Speaking of Jesus, painting is super hot around here these days.  My two youngest have painted their hearts content the last few days-can you guess what their masterpieces are?  Both Hope and David painted Jesus dying on the cross.  I was stunned when they called me over to inspect their work. 
Today while Kyle was in  Governor's School and swimming at  Randolph Park, I took the little ones to the lake.  Hope and David both played in this little pool and had such fun. My heart just grins a happy grin when I see David outside enjoying normal summer fun:)

We finally got Hope on the boat today and then they fought over who was going to drive with Pops!  I let them slug it out and I took a siesta on the boat:)

I feel like such a blessed Momma today.

Speaking of being a Momma, a local friend and beloved kindergarten teacher, Stephanie Powers is praying and hoping to become a Mommy.  Lynn Burkett (125 Countryside Drive) is hosting an Initials Inc party on Friday, June 29th at 6:30 to help raise funds to help Stephanie's dream become a reality. Mark your calendar for a girls night out to shop for a good cause. 

Off to an early bedtime tonight so we can cheer loudly for game three tomorrow night of Kyle's All Star tournament!

Labs and Baseball

Home is such a beautiful place to be.  Yesterday the little ones and I had a great day catching up at home which means beds to change, laundry to catch up on, and some cooking for the week.  Eating hospital cafeteria food for two straight weeks will get you super motivated and excited to try some new recipes.  Kyle is in a day camp this week at the Governor's School in Pulaski and is loving it.  It thrills us when Kyle gets his geek on!!

Yesterday morning we made a stop at Family Physicians of Marion.  They have been beyond gracious and wonderful to us and even UVA brags on how quickly they process labs.  David's labs yesterday were low-especially his hemoglobin and platelets, but they were not low enough for a transfusion.  He has hit the bottom and hopefully we are on the upward climb now.  I did receive a call from UVA saying that his ANC (absolute neutraphil count) is now 5000 and we can blessedly stop the nightly shot.  David is tired but has bursts of energy. 

Last night we got to put cancer aside for a few hours and go cheer on our oldest in his All Star game.  He was the starting pitcher last night and not only did GG and Pops come to cheer him on, but Uncle Chad and Clayton made the trek down I-81 to see him pitch.  Kyle was nervous so we did not tell him that they were coming and he said in the fifth inning he heard Uncle Chad!!  What a nice surprise:)


Here are some amazing pictures that our good friend Sarah Martin took. If she was not too busy chasing her own boys in sports, she would be a great sports photographer. She knows sports and sports etiquette and would be great.  She tells me when it is okay to yell at the umpires enthusiastically cheer and when I need to tone it down.  She has been such an encourager to both of us over the last eight months and we are so appreciative of her friendship. 

Today Kyle is going back to the Governor's School and afterwards the "boy bus of five" is going to stop off at Randolph Park to swim.  The little ones and I are going to head to the lake to let David ride Pop's boat.  David loves a good boat ride and after all he has been through the last few weeks, a weekend on the lake sounds awesome.  The back part of the boat is shady and the dock is shady so the lake is a great place for David to be.  Kyle chose Randolph Park over the lake which means that he is growing up. 

Have a great Tuesday!

Sunday, June 17, 2012

Boring Weekend:)

After the drama of Friday, we have enjoyed a blissfully boring weekend:)  I am so thankful that we have had time at home together.  The last few weeks have been rough on all five of us, and we are all exhausted.  We did spend a little time Saturday night celebrating Hope's real birthday.  I had made cookies for the party that we did not get to decorate due to time and space, so I defrosted them Saturday and the kids enjoyed decorating them with icing and cute little princess sprinkles:)

Dave made a huge cookie full of icing and he licked it all off!  We kept piling on the icing on his for added calories since his weight is sadly back down to 47 pounds.  Two weeks in the hospital was not a good thing for his weight:(  Poor pumpkin-he looks very pale and skinny to us. 
This little princess loved her cookie, but she also loves her watermelon!  I am still in awe that she is three:) 

Fathers Day today has been low key just like mike wanted it to be.  We did church, and then we took the kids to see Madagascar 3.  I have to admit that I enjoyed it too! 
After the movie, the boys loaded up to play some golf.  The beauty of living on the golf course is that David got dropped off on "our hole" because he was tired.  Kyle adores golf these days and Mike needed to practice for an upcoming tournament. 

Hope had some help making her princess cookie.  Hers weighed a few pounds after all the sprinkles:)
Kyle was sweet to keep piling on the icing for David's cookie:)
After the craziness of the last two weeks, I totally appreciate views like this where all three of our babes are together in our own house.  Cancer is so hard on the entire family.  We are definitely seeing the strains on all of our emotions and our exhaustion level.  The nightmare cannot end soon enough.

I love these three angels so much and we all keep reminding ourselves that we are truly on the homestretch.  Our oncologist warned us that the last leg of his treatments would be brutal and she was absolutely correct.  They have knocked poor David for a loop and the rest of us for a loop emotionally.  I worry so much about Kyle and Hope when I am gone.

Kyle continues his All Star tournament tomorow night.  His team won the first game Saturday and we play three nights this week in our Area tournament.  After sitting in the hospital for two weeks straight three nights at the ballfield this week sounds like pure heaven. 

Please say a prayer for David in the morning.  We have to visit our local doctor's office for labs which will not be too traumatic because his port is already accessed.  After the labs are drawn his port will have to be de-accessed which will be painful for him.  His skin under the bandage of his port is in bad shape and I know it will be painful and stressful for him.  Poor pumpkin has been through so much and I long to see him outside having some summer fun versus another painful procedure. 

On a fun note, Mike and I got an email this past weekend from the Ronald McDonald House thanking you all for the pop tabs!!  They said that all the tabs raised a little over $150 for their general fund to help bridge the gap between what families are charged for the night ($15) and what it actually costs to house a family ($76).  Keep collecting those pop tabs as you are enjoying your summer beverages!  They are such a blessing to the RMH!

I am still in awe of my encounter in the parking lot Friday.   I am so guilty of becoming complacent in my faith as the "busyness" of life consumes each minute of my day.  Cancer has reminded me that I must be more faithful to God because He has been so faithful to me.  One minute I am sobbing for mercy on a bathroom floor after watching David endure pain and stress, and the next minute I am uplifted with a reminder from a total stranger that Jesus was with us.  How awesome is our God!

Have a wonderful week!


Friday, June 15, 2012

What a Day

This Momma is ready for bed.  Blessedly and thankfully we will all get to sleep under one roof at HOME tonight!  We arrived home around dinner time and we have enjoyed a lovely evening at the ballpark watching Kyle's All Star team practice. 

The day started rough.  Really rough.  Typically David's labs are drawn at 4 a.m.  so when the doctors are rounding around 9ish then the labs are back and in the computer already for them to discuss with us.  Because of a goof in the system David's labs were not drawn until 9 a.m. and we HAD to wait for them to return before leaving. Sigh.

Then when I was changing David's shirt to put his clothes on for the day I thought his port looked weird-like it was hanging out a little.  I am responsible for giving his antibiotics via his port this weekend so it had to be perfectly in place.  I called in one of our favorite nurses, Katy and she agreed that it looked weird.  She tried to physically push it back it and that only made it come totally out.

She had not put Heparin in it before de-accessing, so it HAD to be re-accessed ASAP to put Heparin in it to avoid it clogging.  Another sigh.  I will spare you the gory details but basically me and three other nurses held him down while Jesus guided Katy's hands to put it back in.  I had to witness my angel screaming at me to stop holding him down and that it was hurting bad. He was pleading with us to stop. 

I will admit that I came unglued.  When my holding down services were not needed any longer and the port was in, I threw off my surgical mask (that made it worse that he was being held down by four masked people) and ran down the hall.  I found a private shower stall in the hall and heaved and sobbed.  I cried out to God screaming at him "enough" and begged for mercy that this whole nightmare be done.  I sobbed and heaved so hard that I thought I was going to throw up. 

I finally gathered myself prayed again and emerged from my shower stall.  I went and hugged my David who was already playing Ipad with a volunteer.  I thanked Katy and we together thanked God that he had guided her hands.  Putting a port in is not easy on a strong, seven year old who is fighting with all the strength he can muster.  We both acknowledged that God was with us. 

Then we signed the discharge papers and finally made the trek out to the SUV.  The really nice man that helps you discharge was not busy and helped me all the way to my car.  We had to ride a floor up on the parking garage and I did notice that there was a lady in the elevator with us. I remember nodding my head at her in a greeting when we got on, but Iwas too busy chatting with the discharge gentleman.

I noticed as we walked towards the car that the lady was walking with us.  She stopped me as I was unloading David and she remarked to me that David was beautiful.  I agreed with her and added that he was super brave too:)  I did not launch into our morning because I was anxious to hit the road.

She then looked me square in the face and asked me if I knew Jesus.  I replied that we were christians and that I did know and love Jesus.  She then said that she felt Jesus' presence so strongly around me and David and that she wanted me to know that Jesus was with us and that the victory would be ours.  She placed her hands on my shoulder and then one of David's and said a simple prayer and then turned around and walked away. 

The world stopped.  Just an hour prior to this encounter I was on a nasty bathroom floor pleading with Jesus for his mercy and intervention because this Momma was tired of seeing her baby in pain.  Even though I am worn out from the drama of the last week, I am celebrating that my Jesus spoke to me today.  We have known all along that he has been with us, but today he sent a messenger to remind me that he was and will be with us. 

David and I hopped in the car and the song Forever Reign by One Sonic Society was playing in the CD player, and those words were so personal to me today.  I felt renewed and uplifted by the encouraging words from that lady and David and I both sang our guts out.  (If you do not know that song, look it up it is so awesome!)

So even though it was one of the worst days of pain and suffering for our David, it was amazing and awe-inspiring for me.  Of course I called  Mike right away to tell him about our encounter and he too was speechless.  I must have been too distraught to feel the presence of God in that shower stall, so he had to use more obvious means to remind me that despite our pain and despair he will never leave us. 

So our day has been awesome, but painful for our Rock Star.  We are all settled in tonight under one roof.  David is anxious to see Ashley who is coming tomorrow to hang with him while we cheer on Kyle and his All Star team at their first game tomorrow:) 

The words Be Still and Know that I am God will forever be more personal to me as I witnessed today a very tangible and public reminder that God is indeed with us always.  Happy Weekend!



Three Years Ago

Exactly three years ago today I was sitting in a hospital under very different circumstances. This time three years ago I was scared and exhausted after laying awake all night in labor watching the fetal monitor begging our little girl to enter the world already!!!

Sadly i do not get to wake up with our birthday princess today, but blessedly this Momma and Dave will hit the road later to head home to sing Happy Birthday to our favorite girl in person.

Dear Hope,


Happy Birthday sweet girl! I am overwhelmed that today you are three. I would be so sad that you are growing so fast but your hilarious personality and sweet nurturing skills soften the blow a wee bit. You make us laugh with what comes out of your mouth and your funny expressions. You bring glitter, sparkles and lots of girly fun to our lives. Your brother adore you and we all love you so much.

We are so amazed at how the nightmare has changed you so much. You used to be so painfully shy, but now you toodle off to "big hospital" preschool like you own the place, and your sweet mothering skills are evident with all. I am amazed at how much you have grown the last year. I get so giddy thinking about the next two years where you and I will be together in preschool making some sweet memories.

You are the most wonderful type of unexpected surprise and we are so thankful that God blessed our lives with you. We pray that you keep your sweet little spirit and nurturing ways forever because God has big plans for you! Keep singing Jesus Loves Me because sweet girl He does so much. We know he is going to use your sweet heart and spirit for Him one day.

Happy birthday princess and Momma and Dave are working really hard to come see you today and give you birthday love in person.

Love,

Mommy

Thursday, June 14, 2012

Morning Report

I just met with David's team. One of the residents tried to face time with him this morning but we were still snoozing! How cool is that?! We are so blessed here with such great and personal care. Yesterday our beloved Dr. Alisanski came by to say goodbye. The lord is moving her to Florida. I am happy for her, but sad for us. We both got a little teary as she left. She was the initial doctor on call when we came in and she literally held me as I cried. We love her but we know that God has big plans for her.

The update this morning is that David is doing well. He is amazingly skinny and pale but right now he is playing beach ball with Amanda the child life specialist. David adores her and she can get him up and moving to help with his stamina.

The team has decided to not change his port with only two remaining outpatient treatments to go. I am thankful. Dr. B thinks that if his port was truly colonized with bacteria he would get sick anytime he was not on antibiotics. That makes sense and we trust his team so much.

We are still planning for discharge tomorrow unless infectious disease feels that he should stay. It is still a mystery what we are fighting because nothing grew on the cultures. We will go home with seven days of Cefepime via his port if Infectious disease is okay with that.

We are enjoying our reading this summer. Every summer we always do the summer reading program from our local library. I brought all of our reading logs with us and David is really enjoying filling his up and adding his stickers. I also signed the kids up for the Barnes and Noble reading program. We read a lot here to take a break from the TV and IPad.

Good day from Charlottesville!

Dave

Tonight it is just me and Dave flying solo here at the hospital. Duty called for Mike to return home for tHe administrative retreat and I am sitting up waiting to give Dave his GCSF shot. The sweet nurses have offered to give it, but we have our system down for a low stress shot and they respect that and let us do our thing. I am watching our boy sleep tonight and the reality of this crazy week has finally caught up to me. I hope that one day when Dave is an old man he will read this:

Dear David,

Our hearts are so full of love for you. You are such an example each and everyday of bravery and strength. I could bawl when I think how much you have endured since November, yet you keep smiling and singing praises to our God.

Never did we dream that when God blessed our lives with you seven (almost eight) years ago that you would teach us so much more than we have ever taught you. You make us see the world differently as we have learned from you that anybody can be used to serve God and love others.

Just like God chose David in the bible to fight that big giant Goliath, you sweet boy are fighting a huge Goliath. We hate that your Task is so big, but we know just like David in the bible you have God on your side. I am so amazed each and everyday how many people you share Jesus' love with and how many people are singing and believing "how he loves us" because of that David Crowder Band song that you sing all the time.

We can't wait to see how God is going to continue to use you, sweet boy to point people to Him. Jesus is so proud of you and He loves you so much. We wish your road was a little smoother and easier but God has an awesome plan for you. We trust in His plan for our family and we know that this nightmare is just a blip on the radar screen of our lives.

Stay strong little man and know how proud we are to be on this adventure with you. Keep singing praises to our God, pointing people to him through your faith and trust and keep fighting the good fight. Keep also spreading the good news that He loves us all.

We love you!

Mommy and Daddy

P.s. I just gave you a shot in the leg that I did not put numbing creme on. Please forgive me :)



Wednesday, June 13, 2012

Wednesday Evening Update

Blessedly David has finally turned the corner!!! Today he has had no fever but that darn pulse rate is still high. We just met with two of David's oncologist who are pleased with his progress but nothing has yet grown on his culture so it is still a mystery what we are fighting.

Our meeting tonight centered around the plan for his last two treatments. I begged to be done with it all, but we must finish the course. Their thought is that maybe there is a scary bacteria lurking in his port and that is why he has now had three scary infections. We discussed surgically removing his port and placing a new one in to avoid any further scary infections.

One on hand I totally respect their opinion and expertise, but I hate to go through That for two remaining treatments. We also discussed pulling the port and putting in a PIC line, but we all agreed that a line in his arm would be torture for Dave with his sensory issues. We will continue to pray and think about this in the days to come.

Sweet Dr Belyea knows that this Momma is desperate to make it to Kyle's first All Star game this Saturday, so if all goes well, we hope to be discharged by Friday! He will come home on antibiotics which we have done before.

David is sitting up now playing play dough that two sweet log readers brought by yesterday! Thank you ladies for the goodies! It is so good to see our boy up and interacting! He has painted a sword from school today and even played some ball with Amanda the child life specialist.

On a fun note, Miss Haley is going home Friday!!! She has waited eight months here for a heart and a perfect match has not come yet. They are taking her home to enjoy summer sunshine and let her be a little girl. Her line was pulled out today and she is running around this place wild!!! Se has to feel free after being tied down literally by the line since October. Please join us in praying for her to have a healthy, FUN summer at home. It is going to be emotional up here when she leaves on Friday morning :)

This place is at full capacity tonight. Since last night there has been 17 new admits. We are so thankful for the wonderful care that we continue to get. Several nurses that Have not even been assigned to David have come by to check on him. The word got out that he was very sick and the staff here has shown our boy some love. One of our favorite nurses even sat with me at lunch yesterday encouraging me-that meant so much.

Wen are so thankful for all the love you all. We appreciate great friends that run crazy errands for us, and wonderful friends that pass our Kyle around welcoming him into their families. Hope is in Radford and Mike headed home tonight for his administrative retreat tomorrow.

We will update if his cultures grow something and the decision about his port. Thanks again for your love :)

Wednesday Update

Wednesday Morning Update


Hello from Mr. Jefferson's University.  David's update is as follows:

--Spiked a fever around midnight.  Tylenol worked and slept fine.  Still unsure why this is occurring.
--Handled meds overnight better than yesterday.
--Pulse rate is still elevated and an area of continuing concern.
--Nothing has grown to determine which bacteria he has.
--Chest x-ray did not indicate pneumonia but he did have a little fluid on his lungs.
--He is awake this morning in an alternating grumpy/friendly mood.  We are just happy to see him sitting up and talking with us.

Cute story.  Laura has been talking with him about his birthday party which will be in July.  He keeps insisting that he is going to have his party here at the hospital.  While we cannot wait to get home with a healthy and well David, it is a testament to this place that he is okay with being here because he knows he is well taken care of.

I hope that the summer is going well for each of you.  Thank you for your continued prayers for our little RockStar. 

Doctors just met with us during rounds and still no news on the blood cultures.  He is not comfortable even talking about discharge until fevers go away and the pulse rate goes down and stays down.  The fluid on the lungs helps us understand why his breathing was labored yesterday.  We are all thrilled with his progress but we will all breathe easier when that pulse rate gets down and stay down.

Thank you all so much for your prayers. 

Tuesday, June 12, 2012

Jesus Will Meet You There

This day has certainly been a roller coaster ride.  Right now I am watching David sit up in bed playing Rock, Paper, Scissors with Mike.  All afternoon; however, we have anxiously paced his bedside watching his vitals go haywire.  This afternoon David's fever been ranging from 100-102, his pulse rate has been in the 130's, and his respiration rate has been in the high 30's.  We have been in wonderful hands as he has received so much care from our nurse and doctors.

Today we have been so concerned about David because he has been so sick and lethargic.  While he slept today his breathing was very labored and it was hard to watch.  He did have a chest xray to check for pneumonia, but the results are not back from that yet.  Nothing has "grown" yet on his cultures which means we still do not know what is making him this sick.  This is the sickest he has been to date which is hard on our hearts.  We have paced, prayed, and met extensively with his doctors.  He is on two different antibiotics, and if he crashes again they may add a third to his treatment.  Right now his Tylenol via IV has helped his fever stay down at 100 so he has a little spunk right now which is WONDERFUL to see!! 

So at this time, this is all we know:


He has some type of infection that has caused him to become septic.

He has not turned the corner yet, but we are seeing his little spunk come back.  He did sit up and call Ashley and Jason which was wonderful to see.  He has eaten five little bites of his beloved oatmeal which thrilled my soul to spoon feed to him.

We have amazing care here.  Everyone has been so loving and kind to us.  His team has spent tons of time with us helping us talk through why he has not yet turned the corner and bounced back from this nasty bug. 

Today we have been very scared.  I paced his bedside and Mike sat stoically for quite a bit of time this afternoon.  We hate to see our buddy so not himself and labored breathing is so hard to watch.  We have both watched his monitors all day watching for little signs of improvement. 

Over the last few days I have been reading Mary Beth  Chapman's book Choosing to SEE and it has been so encouraging.  Her husband, Steven Curtis Chapman is an amazing christian singer and they tragically lost one of their adopted daughters when she was hit by a car by their son several years ago.  Her book is amazing and tells lots of the stories behind his songs.  I have enjoyed it so much.  Today while David was sleeping I was too anxious to read or do much, but I did listen to some music on on Youtube.  His song, Jesus Will Meet You There, is so inspiring and on days like today remind me that our faithful and merciful Jesus is here with us. 

Today we were anxious but we know that God has a plan for David and that He is holding him in his hands.  Enjoy this beautiful song that has ministered to us here today.



Thank you all so much for the love, prayers, texts, emails, calls, and blog comments.  We feel your love so much today and we are so grateful that you are holding us up in prayer.  Mike and I have not had the most eloquent prayers today, but our God knows how scary this all is.  No matter where you are, Jesus will meet you there. We believe it because we know he is here with us in this scary place.

Please Pray

How Quickly Things Change

An hour ago David was doing fine but now has turned worse quickly.  They believe that it might be related to the Gent antibiotic going into his system and waging war with the bacteria.  His heart rate is up to 145, his fever has spiked, and his breathing is labored.  He is sleeping and we have almost constant care.  Please keep the prayers coming for David as he really needs them right now.  We will post again later this afternoon an update.
D-Rob Update

Good morning from UVA.  Here is an update on David (aka D-Rob)

--He is feeling better this morning
--He rested well overnight
--Still on two antibiotics
--Has had a blood transfusion
--His heartrate is still elevated running around 130 and they want to get that down to low 100s.  Most likely up due to pain or infection. 
--Will not eat.  Has requested food but will not eat it.  Mouth sores still looks bad.
--Tried to swab the magic mouthwash this morning but fighting us.
--He is playing Ipad which means he has a little more energy.
--Other than the mouthwash he is cooperating with treatment plan.


There are many cute stories about David and the hospital staff.  One of my favorites played out again this morning.  As Dr. Belyea did rounds, he listens to David with his stethoscope and David always has to use one to listen to Dr. Belyea's vitals. He mimics everything the doctor does. 

I believe he has turned the corner and is on the road to improvement.  We try and not get too excited that he is feeling better because when we do something else occurs but we are encouraged that he is improving.  These bacterial infections are scary and we really want his pulse rate to slow down.  It is still too early for the blood cultures to have "grown" something so the type of bacteria we are fighting is still a mystery.

Thanks for all the prayers for David.  Often the most dangerous thing while in the treatment process is fighting infections.  The good Lord continues to protect David when these occur.  We have had many scary moments but he is always with us and that is such an awesome feeling.

We hope each of you has a great day.

Monday, June 11, 2012

Dr Consult

I just met with Davids oncologist, Dr B. who feels that David is holding his own but has not quite turned the corner with this nasty bacterial infection and sadly he is once again septic. We all had hoped that as the IV Tylenol kicked in his fever and pulse rate would go down. The temperature has come down, but the pulse rate is still running in the 130's which is weird. It shows the team that he possibly has a nasty infection so they are adding another antibiotic (gentomycin) to his treatment and also giving him a blood transfusion.

He is due for another dose of meds here in a few minutes and our resident will be bedside to make sure his stats stay stable. Often when antibiotics are pushed through the line that is infected the toxins are pushed throughout his body which makes his stats go haywire. I prayed hard while they did it earlier so once again I will pray for that.

He is a sick little guy whomhas slept for most of the afternoon and evening. Tis place is full tom the brim and we are in a tiny room. I am sad we are here, but so thankful,for our amazing care, your encouragement and love, and our heavenly Father who has sustained us today.

Evening Update

After wailing all morning blessedly David is resting comfortably. His fever peaked at 103 today and his pulse rate was around 160 this afternoon. We have had some wonderful residents and our wonderful oncologist close by today monitoring David's stats. He is a pretty sick little guy with some type of bacterial infection. iwas worried he would get septic again and sadly the decrease in dosage did not keep us from going down this road again. Sigh.

Mike is finishing up his board meeting tonight and will be here much later tonight. Pops just took Hope to their house and saying goodbye to her broke my heart. She has been such a trooper today when things got crazy. I am hoping to rest this evening since I got less than two hours of sleep last night. I am worn out and look terrible.

Hopefuly we will known in a day or two what type of bacteria he has so that his doctor will make sure that the Cefepime is the correct fit for the bacteria. His weight has dropped again to 49 pounds which makes me nervous that he will continue to drop with that big sore in his mouth. Chemo is infamous for creating these painful mouth sores :(

I am so tired and sad we are back here again this week. I then keep reminding myself that we are so on the homestretch and just as I held David in my arms today while he had the chills, Godhad us both in his arms. I once again felt his presence so strongly when I watched Davids stats go up and fear tried to overwhelm me. This is such a sad dreary place, but here where it is easy to lose hope is where I feel our Jesus so strongly. When it is dark and dreary here is where His light shines to me. Good evening from 7 west!

Roller coaster Ride

Whew-the last few hours have been crazy with our Rock Star. He felt great all weekend and then about 5:00'yesterday he just crashed. He snuggled on the couch and said he was tired. Just two hours before we were visiting with the Burkett kids and Lynn here in Charlottesville. He was wild visiting with them at Sweet Frogs and I even commented to Lynn that I felt silly hanging out here when he feels so good.

I should not have spoken too soon:) around 2:00 this morning David was crying for me and he seemed in pain. I rocked him in the recliner and he could never get comfortable. When he took a sip of juice I saw a HUGE sore on his mouth. I was worried because by this time he was wailing in pain and he threw upnthe Tylenol that I gave him. I called the on call oncologist and wendecidednthat the ER was not the best choice for him because his counts are low and we were worried that he might catch another bug.

So I did what always calms him down. We all three got in the car and drove around Charlottesville in the wee hours of the morning. Amazingly he did calm down and sleep so indrove on to the hospital and satbin the parking lot until clinic opened at 8.

We got to clinic and David wailed in pain for hours. The nurses started giving him small doses of morphine and Benadryl to relax him. It took forever for it to kick in and give Him relief. I was beside himself watching him wail and wail in pain. That is hard on a Momma's heart.

While in clinic David started shaking and shaking which means that he is working on an infection. His temperature started to rise and this momma got nervous. Those are the symptoms of a bacterial infection.Sure enough his temperature rose to 102 and the doctor started Cefepime. The thought is that his large open mouth sore was perfect a place for bacteria to get in.

So we are now settled in to seven west and David is finally comfortable. Sadly we will be here for several days to see if any bacteria grows. Another week in the hospital is not what we want, but once again we were so thankful we were close by and could get David quick care.

Hope has been an amazing trooper considering the fact that she was yanked out of bed in the wee hours and witnessed her Dave in so much pain. Miss Amazing Meghan helped Hope get some breakfast when we arrived in clinic and arranged for her to go to preschool with Haley. Pops is here with me now for some reinforcement and he will probably take Hope home to Radford with him.

I will update as I know more. Septic bacterial infections are always a possibility post chemo and they are so scary. Once again I am grateful to God that we were close to our amazing team here. We are so blessed.

Saturday, June 9, 2012

Family Reunion

Tonight was a very happy Robinson family reunion when Mike and Kyle arrived this evening.  We enjoyed some yummy Mexican food and an evening at the playground.  I have missed my Kyle so much and Mike has missed David and Hope so much.  This is so hard to be separated but we just keep reminding ourselves that we are on the homestretch!!

Speaking of treatment, we are not clear if David did receive his chemo this week.  He has felt great (praise God!) and before his counts bottom out later in the week, we have enjoyed some playground time, and a few outings.   The kids enjoyed storytime at Barnes & Noble today and we walked around the mall.  David cannot be out in the sun in the hot part of the day so cool inside activities are best for us.
Oh this picture melts my heart in two from earlier in the week.  Here are Kyle and David walking together to school.  Watching Kyle push David's IV pole and knowing that they were going together made me tear up.  I hate this nightmare, but we have witnessed some sweet and tender family moments on the floor. 
Friday evening we were discharged and came to the condo.  David and Hope were so wild and excited that we hit Penn Park playground to get some energy out.  I was stunned that David felt this great after five big chemo treatments. We are so grateful.
This little girl loves her David and loves a good playground:)
This little Rock Star was sooo excited to be out of the hospital and outside in the fresh air that he just grinned these big grins. 
My sweet little playmates.  It is so good for David's soul when his siblings are here.
This sweet girl is growing up so fast.  She had a great week in "big hospital" preschool and we are amazed how much she has come out of her shell. 

IF you look very very closely, you can see a little light peach fuzz returning on David's head.  I am hoping it returns to its original red color, but we have been warned that often it returns lighter. 

As you can see a little girl did not want to leave the playground!! This is how I felt when we were first diagnosed back in November:)

As good as David feels we are so tempted to return home Monday morning after clinic.  But our doctor did advise us to stay locally through Thursday since he got so sick so fast last time:(  We trust and respect them so we will stay put to watch David's counts bottom out and then hopefully start rebounding later in the week.  We are thrilled that we should be home for Kyle's Area All Star tournament that starts next Saturday!! 

Happy weekend from Camp Pendleton!


Friday, June 8, 2012

Happy day

Discharge day is always a happy day around here! David finished up his chemo early afternoon and after some post-chemo fluids we were able to be discharged!! We are so thankful and grateful that this week is behind us and now we are resting at Camp Pendleton while we catch up on laundry and wait andsee what his counts are going to do. We have an early clinic appointment Monday for labs to check his levels. Hs hemoglobin has already dropped down to nine so he possibly will need blood later in the week.

Today Hopes afternoon preschool was cancelled (much to her dismay) so she and I snuck out this afternoon for some fresh air. Not only are we blessed with the use of this awesome condo, but it also has a pool! Hope really enjoyed sneaking away from the hospital for a quick dip in the pool. Sadly we missed a visit from Susan kilby, Susan Clawson, and carol Mullinax but David got to see them! Thanks ladies for the visit:)

GG is on her way home and we are so thankful that she came to help sit ith Dave so I could get out for a minute. This stay was long for some reason, but as always we had wonderful care. David is eating and drinking well and seems to be full of energy. We will be nervous this week as we watch how low his counts get. We pray the dose reduction will keep his white blood cells from going so low that he becomes septic again. We covet your prayers for that this week. I will be starting the Neupogen shots tomorrow to help his body get those new white blood cells produced.

We hope to enjoy some early morning or late evening outdoor fun to work on Davids stamina. After a week long stay he is pretty wiped out but middle of the day sun is not an option for him. We are so thankful for our Charlottesville home tonight to rest and snuggle. David is currently watching the movie Hook and eating some cheese sticks! Good evening from our Charlottesville home :)