Friday, December 30, 2011
Thank you friends for your continued prayers for our family. We are ready to say goodbye to 2011!
Thursday, December 29, 2011
New Years Eve last year was such fun as we had a progressive dinner with three other families. We are so thankful to be surrounded by such love here in our county. Here are Hope and David practicing air hockey before the guests arrived here for appetizers.
I really should end with a Christmas picture of my three, but frankly this moment was one of the highlights of the year. I sobbed when I walked this angel back into the school and the arms of his teacher, Mrs. Hubble. I heard the roar of those students as they chanted "David David" and saw all the tears and smiles from the building, and it was a moment we will never ever forget. All those scary moments on 7 central and all those scary doctor consults faded away as I saw first hand the love for our boy. I still bawl thinking of the love flowing in that building that day.
David has felt very good since the chemo on Tuesday. We are so thankful but we are battling the eating war. He has very little appetite, unfortunately, but we are trying. Even though last week he ate very well he was also very active because the weather was so warm and maybe that is why he lost weight this week at clinic? This week has been colder so maybe all this Xbox playing will help him not burn as many calories:)
Here is the Rock Star rocking on with her new paper jamz guitar from his cousins in Shreveport. He has really felt good this week and we even went to the movies to see Chipwrecked-the new Alvin and the Chipmunks movie.
Wednesday, December 28, 2011
The scan on January 6th is scheduled for 10 a.m. They would like to not sedate him because when you are sedated machines help you breathe which means that your lungs are not opening and closing normally. If he is sedated and David has "help" breathing while sedated there is a good chance that they could not see 100% of his lung surface and we would always be worried that something was missed. I understand completely the medical reasoning behind not sedating him, but CT scans are super stressful for him. We are hoping he can hold the Ipad above his head and play Angry Birds and not be so stressed:) The last CT scan was a complete and total nightmare, so we will see.
Our oncologist, Dr. Alisanski (whom we love and trust) feels that we will get the results that day. We will still visit clinic at 1 to receive chemo and she thinks that maybe the results will not come back quite that fast, but later in the afternoon. Thankfully it HAS to be read that day because if we have to switch to the harder regimene which includes radiation, then that will start the following Monday and she will have to scramble Friday afternoon to get the radiation oncologist (Dr. Schneider the previous one we worked with at the Emily Couric Cancer Center) on board and ready for Monday.
Oh how I love these two Disney characters! Hope Madeline adores her Belle costume and I do not even mind all the darn glitter that comes off of it everytime she wears it:) David of course is in heaven in his Beast costume!
David wore his costume for a while Christmas Day and made everyone act out the parts! I always get to be Mrs. Potts which makes me happy! Here is the Beast "dead" before he comes to life as a prince! David has watched the movie so much that he can accurately play this scene! It is hilarious to watch! Ha!
Poor Pops always has to be Gaston, and he is a good enough sport to play dead when the Beast finally kills him at the end of the movie!
Yesterday while Mike and David checked in at clinic, I went to 7 Central to check on Haley. I was so praying that she would be in the PICU recovering from her surgery because a heart had come available during the holidays, but sadly she is still on the floor waiting for her heart. The exciting news is that the local news station did a story on her Christmas Day and Christy, her Mom, is hoping that God can use that news story to help bring Haley a heart. We picked out a cute outfit for her at Crazy 8 and I also bought Hope Madeline the same one so I will think of Haley when Hope wears it:) It was nice to catch up with Miss Haley and Christy and I assured her that we, as well as our friends were praying for her. This was week 11 that they have been in the hospital waiting on a heart. God love them. Nineteen days of inpatient just about did me in, so I cannot imagine 77 days and counting with no end in sight.
Today is catch up day around messy Camp Robinson. Christmas has exploded in every room in this house, so I am trying to catch up here in case we do have to return as inpatients on January 9th. I am also excited to head to preschool to get plans rolling for the new year. I have missed my little preschoolers so much:)
Tuesday, December 27, 2011
Next Friday will be a big day for us. We will go up Thursday evening for the CT scan Friday morning. This scan will be important to determine his chemo regimen. If the lesions are gone, then we will continue on this protocol which includes the chemo drugs he has already received for the next 31 treatments. Clearly this is what we pray for daily:)
If the lesions are not gone or there is a loss of heterozygocity (which we are still waiting on results from original surgery), then we will switch to another chemo protocol with different drugs and lung radiation. If the lesions are still there then we will have to return to Charlottesville the following Monday for daily chemo treamtent and radiation for at least five straight days in the new protocol.
Overall despite the weight loss, David had a good evaluation today. His blood pressure, Creatinine level, and blood work all came back good. He is cleared to be out and about since his neutrafill (sp?) level was good.
Okay, get your tissue ready. Today we received a very generous gift of a new Xbox with an additional controller and three new games courtesy of a special family in Albemarle County. Their son, Jeffrey, died from leukemia several years ago. When Jeffrey would come in for his treatments he would bring his Xbox and share it with other patients on the floor. When he realized that he was going to lose his battle, he started giving away all his electronics to friends on the floor. In his memory, this wonderful family now gives away a new game system to every newly diagnosed child with cancer at UVA. Unbelieveable huh?!
This nightmare has been so hard and today was hard when his port had to be accessed again. The numbing creme helps some, but it does not take away the anxiety David feels. But through this nightmare we have been reminded how good can come out of hard times. We have been so blessed with all the outpouring of love from you all and the Grace and Mercy from our Lord. Then to realize that complete strangers would give us such a generous gift just reminds us that we have so many folks praying and rooting for us in this battle again Goliath and that makes us feel so much braver.
There have been days lately that we have not felt very brave. Please never forget that we are so weak and scared and the strong one here is our Lord Jesus. We have turned this battle over to Him, and we know that God is holding our brave Rock Star in his capable hands.
So prayer warriors, we covet your prayers for the scan next Friday, January 6th. Please pray that they get a good scan of his lungs and that the lesions are all gone:) Thanks for the love and goodbye from the SUV thankfully heading down I-81!!
Monday, December 26, 2011
Sunday, December 25, 2011
My kiddos were agreeable to pictures under the tree before we headed out and amazingly Rock Star has felt well this week. We are so thankful that David has felt well enough this week to enjoy some low-key festivities.