Finding a Routine

8/24/2011:  2:00 PM

We are trying to find a new routine - just part of our new normal. The last couple of days have been great. I gave Davis his chemo on Monday before school. He had to go to school accessed (which I am not a fan of).  The home health care nurse was able to meet him at 10:00 at his school to draw his CBC (blood count) and de-access his port.  Kyle and I met her there, and we were able to do so in the makeshift bedroom that the school has set up for him out of a rarely used interventions room.  We try to avoid the nurse's office as much as possible because of the traffic of sick children. The whole blood draw and de-access thing was about ten minutes tops, and he was back to class. He had an awesome day at school and even came home and took a dip in the pool. 

Tuesday was equally as good. It was the first day that I dropped him off at school and came home.  I think I need to keep tabs on him more than he needs me to keep tabs on him.  Anyway, he went out to recess for the first time. He loved it; he only wished that he had his chest guard because he was ready to play and couldn't. His chest guard should be in at the end of the week.  The chest guard will protect his port while he does some mild PE and recess. He still won't be able to play football with the majority of his friends, but Frisbee or tag are  not out the of question. His buddy Wade is kind enough to volunteer to stay inside and play games with Davis, but Davis encourages him to go out and play. Davis feels guilty asking Wade to give up his recess time to stay inside. Wade doesn't mind, but Davis doesn't get that. They are too considerate of one another, which is incredibly endearing. Soon, Davis will be able to join everyone out on the playground, so it shouldn't be a problem.

Yesterday, we received his counts from Monday.  Wow!  Night and day difference from last Wednesday. If you remember, last Wednesday his white blood cells were around 2.2 and his ANC (immune system basically) was over 1700.  (Healthy children are over 1500.) We were tickled that he had such a high ANC being in school despite being on chemo.  Well, we know the chemo is working now. On Monday, his white blood cells were .6 (healthy kids are between 5-10) and his ANC was 279. Yikes!  The nurse told me that he should continue to attend school as long as he felt well enough to go even though his numbers are low and that he needs to really be routinely washing his hands.  As a precaution, Davis does wear a mask nearly everywhere. He has gotten into the habit of removing it for a second when I pull the camera out of the purse for the pictures.  So thoughtful.

Today, Davis woke up with some dizziness and a pretty bad headache. We put a call in to the doctor, and despite his illness, we tried to keep the morning routine, adding a pain killer to it. A few phone calls later, we are still trying to piece together what is wrong: dehydrated? spinal migraine? acid build up? drop in hemoglobin? Davis will get another CBC today, so we may have more answers tomorrow. If not, we will see the oncologist on Friday pending he doesn't develop any more symptoms in the meanwhile. I did stick around his school this morning to keep an eye on him. He felt much better and was doing fine. Huh.



bed upgrade



Kyle and I managed to update Davis's bedroom a bit. He received a very generous gift card from the organization Friends of Kids with Cancer, and he decided he wanted a new bed.  He has been abundantly blessed with toys, games, puzzles, galore, so we thought that was a good choice too. He picked out a loft bed with a futon underneath.  Great way to update the space. He is ready to start planning slumber parties again. I am convinced that loft beds were solely intended for college students who never plan on making their beds, because making that loft bed was close to impossible. After eighteen minutes and a near throwing tantrum later, I gave up. We will conquer that a different day.

On Friday, Davis will receive a new chemo. He has had it before, but hasn't had it in a while. It will be re-introduced. It has some yucky side effects: jaw pain, hand and feet numbing, leg muscle weakness. This medicine tends to give Davis a little trouble, as he has experience all of the side effects to some degree.  He will also get the dreaded chemo called PEG. It is a set of two gigantic shots that are shot into the upper leg muscles at the same time. It's is horrible. I nearly became faint watching the last time. They are terribly painful too. If there was just one thing I could do for Davis to lightened his load, it would be to take these shots for him. Obviously, it weighs pretty heavy on his mind, and the doctor, despite concerns for reactions, has agreed to administer the shots while he is under anesthesia. He is spared the anxiety of the actual needle, but sadly he will still feel the pain of the aftermath. We just have to keep reminding him that this too shall pass. Speaking - I mean, writing - of anesthesia, Davis will receive another intrathecal dose of chemo (spinal tap).  If he breezes through Friday, he will have the weekend off (chemo free). 

He has big hopes and plans for the weekend. One of his best buds, Drew, is turning ten, which means it is time for a celebration, and it's Ashmore Day, of course. Not to mention, Friends Sunday at our church.  We are not exactly sure what he will be able to do, if he is allowed to or up to doing anything at all. It all depends on how he feels, his health, his counts, and the doctor's orders. Davis gets kinda stuck in the whole my-mind-feels-healthy-and-is-ready-to-go-but-my-body-won't-cooperate situation. My guess is that it is similar to what I feel at times. Most days I still feel seventeen years old, but my body sure slows me down. I am sure I am not the only one out there.  Some of you may know what I am feeling.

We continue to appreciate all of your positive thoughts, concerns, and prayers for Davis and our family. Outside of God Himself, it provides us the stability we need.  We ask that you continue to pray against the side effects, including any possible side effects from the radiation he will start on Monday.  Most importantly, we continue to ask that you pray with us that Davis will be healed and CURED from this cancer (and any secondary cancers) forever.  We draw comfort from knowing that we are not fighting this alone.

We will keep you posted.