Today was snow day #1 here in the mountains of Virginia. I was a little disappointed about the snow because I was eager to go teach some little preschoolers today and I was sad that there was a day that David could go to school but the weather did not cooperate. So I just decided to enjoy the day and let myself rest. I have chanted the bible verse over and over in my head "come to me all who are weary and I will give you rest"
Mike and I are not tired (well we kind of are) because our children bed hop and you never know who is going to end up in who's bed. David's bed is in our room but he often makes his way to our bed and lets just say Hope's bed is not one we have to make in the morning:)
We are both weary with nerves I guess. We are nervous but full of faith that God will meet us in that CT scan room Friday. We are nervous because David was really sick yesterday and threw up a LOT right before bedtime. Cancer is so sneaky and sneaks into every part of your life.
The nightmare just does not allow us to relax. We are always feeling David's forehead for fever, or checking his incision, or on the phone with a doctor and or insurance company. Going to dinner for two hours without kids on New Years Eve was truly a luxury.
I am not whining or even trying to have a pity party, but it just shows that we have to trust in the Lord. This is all so huge and so scary that our anxiety and stress could easily have devored us by now. Instead, our Lord has been so faithful to us and has given us moments of laughter, lots of hugs and smiles, and most importantly rest when we have desperately needed it. He knows what we need.
I am so thankful for our marriage. Heaven knows it is NOT perfect, but we have realized that this thing called cancer in our life is so huge and scary that we must cling to each other and our Jesus. We will not survive without each other and our Savior.
We continue to count down the days until Friday. We know it is going to be a grueling day on David with a CT scan with no sedation, a nebulizer treatment that he hates, and then his chemo. I received a phone call today from one of the oncology nurses clarifying everything for us. One of the things that impresses us about UVA is that the doctors communicate so well. The different teams of doctors really do plan ahead and communicate.
We will go to the clinic (where he gets his weekly chemo) to have his port-a-cath accessed at 8:30. Then we will go to radiology at nine and they will try the CT scan without sedation. Then if that does not work and we do not get good images, then the anesthesia team will come in at 10ish and sedate him. Of course they want good images without sedation so the radiologist can get a view of 100% of his lungs, but they are also realistic that he is a sweet seven year old with Down Syndrome:) His strong will is already a little famous in C'ville:) Then once the images are done then we will hopefully get a little lunch break and then he will have his regular chemo appointment in the clinic around 1. Whew-I am tired thinking about it but I know it all must be done and that our Lord will be there.
We are ready to root on the Hokies here tonight! It is a snowy, cold night here in Virginia and the snow is so beautiful:)
Tuesday, January 3, 2012
Monday, January 2, 2012
Scary Day
Today has been one of those days that has reminded us how scary cancer is. Blessedly David has felt pretty good lately with minimal throwing up and just a little fatigue. He has enjoyed his new Christmas toys and he has felt good. Until today.
This morning he woke us up at 6 a.m. and needed to go to the bathroom. When he was pottying he pointed to the area near his good kidney and said "hurt." Of course we both freaked out and we called the oncologist on call at UVA. (yes we have their numbers in our phones). I spoked with the oncologist who asked me a bunch of questions and listened. Really listened. He then asked me what David was doing now. I said that he had curled up on my chest like a newborn and was asleep. He said to go ahead and let him sleep and if he is still complaining when he wakes up to come in for a scan. Blessedly he did not complain when we woke up, but all day he has been lethargic. We even took him to his favorite pizza buffet and he fell asleep during lunch and then threw up/dry heaved in the parking lot. Then as you can see from the above picture he took a three hour nap.
We kept checking for fever while he was asleep. FYI: if he ever has a fever at 101.5 or greater he has to be seen in a hospital within an hour due to risk of infection. Needless to say we have invested in a good thermometer and take it regularly. We are not even able to give him much Tylenol because tylenol can hide a fever. Infection is super scary and needs to be treated immediately. We even brought home some Huber needles so our local ER can access his port-a-cath and administer antibiotic if he ever needs it within an hour. We try not to live in fear, but this is our new normal around here.
This morning he woke us up at 6 a.m. and needed to go to the bathroom. When he was pottying he pointed to the area near his good kidney and said "hurt." Of course we both freaked out and we called the oncologist on call at UVA. (yes we have their numbers in our phones). I spoked with the oncologist who asked me a bunch of questions and listened. Really listened. He then asked me what David was doing now. I said that he had curled up on my chest like a newborn and was asleep. He said to go ahead and let him sleep and if he is still complaining when he wakes up to come in for a scan. Blessedly he did not complain when we woke up, but all day he has been lethargic. We even took him to his favorite pizza buffet and he fell asleep during lunch and then threw up/dry heaved in the parking lot. Then as you can see from the above picture he took a three hour nap. 
We kept checking for fever while he was asleep. FYI: if he ever has a fever at 101.5 or greater he has to be seen in a hospital within an hour due to risk of infection. Needless to say we have invested in a good thermometer and take it regularly. We are not even able to give him much Tylenol because tylenol can hide a fever. Infection is super scary and needs to be treated immediately. We even brought home some Huber needles so our local ER can access his port-a-cath and administer antibiotic if he ever needs it within an hour. We try not to live in fear, but this is our new normal around here. Thankfully lots of prayers helped today and he never spiked a fever and since his marathon nap he has felt well. He even asked for some Easy Mac and cheese-one of his new favorite foods.
To encourage some more calories we even baked some home made chocolate chip cookies and he has eaten several. We still do not know what caused the sickness today, but the scan on Friday cannot come soon enough.
We have pulled out some board games tonight and we have enjoyed Hungry Hungry Hippos and Toy Story Yahtzee. He seems much better now, but of course we still worry. Every moment of everyday cancer is in the forefront of our minds. It is so sneaky that way.
Here is a cute picture of our cookie monsters eating some of our homemade chocoalte chip goodies:)
To encourage some more calories we even baked some home made chocolate chip cookies and he has eaten several. We still do not know what caused the sickness today, but the scan on Friday cannot come soon enough. 
We have pulled out some board games tonight and we have enjoyed Hungry Hungry Hippos and Toy Story Yahtzee. He seems much better now, but of course we still worry. Every moment of everyday cancer is in the forefront of our minds. It is so sneaky that way.We are so anxious about Friday. I dread it but know it must be done. I know that our God is with us and is bigger than any cancer lesions. I also clinging to the verse in Luke that says " The things which are impossible with men are possible with God (Luke 18:27). Sadly we often elevate our problems to be these huge mountains in our lives and we forget that our God, the alpha and omega, is larger than them all. His power and mercy far exceed anything we can believe. He will be there with us and he loves David so much.
Please specifically pray:
That the lung lesions are gone and that we can stay on the "easier" chemo protocol.
That the CT scan goes well without sedation and that they can get great views of his sweet little lungs.
He will also receive his monthly bactrim treatment via nebulizer and mask to ward off pneumonia. It was horrific last month so I am already dreading it for this week. It is very crucial to receive the treatment, but he hates it and it is scary for him. We cannot do give it to him orally because he throws it up.
When I see this list of "must dos" on Friday I start to get panicky. Then I take a cue from our Rock STar and start 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
Rock Star has taught us so many life lessons and we are so thankful. We are thankful to our mericful God that has NEVER left us for a moment of this nightmare. We are thankful to the wonderful care that we have and will receive. We are so thankful for you, Rock Star's fan club, that has prayed for us and loved on us. How can we be discouraged or dismayed?
Here is a cute picture of our cookie monsters eating some of our homemade chocoalte chip goodies:) Good night from Camp Robinson!
Sunday, January 1, 2012
Welcome 2012!!
Welcome 2012! I pray that this year that we as a family deepen our faith in Jesus and that we will look for more opportunities to serve Him each and everyday. He has been so faithful to us, that it is time for us to be bolder witnesses about Him. Because of the Nightmare we saw so intimately how He ministered to us in our deepest grief and we need to share that love and hope with others.
I am just catching up on some cute pictures from this past week. How cute are Kelsey, David, and Hope playing Ipad here?
I have thoroughly enjoyed the Tim Tebow's book even though it is a little football heavy for me. His message is so clear and I cannot wait for Mike and Kyle to partner read this. May my children have such large hearts for Jesus and use their gifts to bring glory to His name.
Speaking of large hearts, this is what arrived from a gracious and loving servant of Jesus the other day!! This amazing woman named Peggy in Alabama does not know me or my son personally, but she has read our blog and prayed for us and found these plumcots in her Alabama grocery store and sent these to us along with some homemade goodies. They are a cross between apricots and plums and she thought of us. Can you believe it? May we all have such a gracious heart as Peggy's and look for ways each day to bless others. Wow.
As you can see, these plumcots blessed my boy:) We have seen first hand that the graciousness and goodness of others can be such a blessing. We have been on the receiving end of some gracious love and frankly we have been so encouraged and blessed by thoughtful people. in 2012 I pray to be as giving as you all have been to us.
New Years Eve was a fun evening around here. Jason and Ashley had offered weeks ago to keep our kids while we went out to celebrate our anniversary that happened over Thanksgiving when we were in the hospital. We got to go out to a wonderful local place and have a nice kid-free meal. I know in the upcoming year we will need each other as we continue to battle the Goliath in our life called cancer, so it was such a blessing to spend a few hours together without having to cut up food, take a million trips to the bathroom, and have an uninterrupted conversation. I pray in 2012 I can be a better wife. Mike works amazingly hard in all aspects of his life and I am proud to be his wife.
We came home from our dinner out to find a Kinect party going on in our room! Ashley and Jason connected the Kinect feature of our new Xbox up while we were out and they were getting their Kinect on! It is hilarious to watch! Here is AShley doing hurdles! The only problem is that we are worried that David will be too active doing it and burn too many precious calories:)
Here is Kyle sprinting....
David boxing :) He has really felt very good this weekend. We are so thankful and we are praying hard about the scan this Friday. We know that God will be there with us and that you, our prayer warriors, will be praying hard for us. Thank you.
I am just catching up on some cute pictures from this past week. How cute are Kelsey, David, and Hope playing Ipad here? 
I have thoroughly enjoyed the Tim Tebow's book even though it is a little football heavy for me. His message is so clear and I cannot wait for Mike and Kyle to partner read this. May my children have such large hearts for Jesus and use their gifts to bring glory to His name. 
Speaking of large hearts, this is what arrived from a gracious and loving servant of Jesus the other day!! This amazing woman named Peggy in Alabama does not know me or my son personally, but she has read our blog and prayed for us and found these plumcots in her Alabama grocery store and sent these to us along with some homemade goodies. They are a cross between apricots and plums and she thought of us. Can you believe it? May we all have such a gracious heart as Peggy's and look for ways each day to bless others. Wow.
As you can see, these plumcots blessed my boy:) We have seen first hand that the graciousness and goodness of others can be such a blessing. We have been on the receiving end of some gracious love and frankly we have been so encouraged and blessed by thoughtful people. in 2012 I pray to be as giving as you all have been to us. 
New Years Eve was a fun evening around here. Jason and Ashley had offered weeks ago to keep our kids while we went out to celebrate our anniversary that happened over Thanksgiving when we were in the hospital. We got to go out to a wonderful local place and have a nice kid-free meal. I know in the upcoming year we will need each other as we continue to battle the Goliath in our life called cancer, so it was such a blessing to spend a few hours together without having to cut up food, take a million trips to the bathroom, and have an uninterrupted conversation. I pray in 2012 I can be a better wife. Mike works amazingly hard in all aspects of his life and I am proud to be his wife. 
We came home from our dinner out to find a Kinect party going on in our room! Ashley and Jason connected the Kinect feature of our new Xbox up while we were out and they were getting their Kinect on! It is hilarious to watch! Here is AShley doing hurdles! The only problem is that we are worried that David will be too active doing it and burn too many precious calories:)
Here is Kyle sprinting....
David boxing :) He has really felt very good this weekend. We are so thankful and we are praying hard about the scan this Friday. We know that God will be there with us and that you, our prayer warriors, will be praying hard for us. Thank you. Welcome 2012 !!! May this be the year that the cancer word is eradicated from our baby's lungs and all those others that continue to fight this Goliath each and everyday.
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