What a Busy Day

Noah developed an itchy red rash over most of his torso after he went to bed last night.  Apparently he didn't sleep very well at all because of the rash and consequently neither did Lara.  They came into my room at about 6:30 this morning for a second opinion.  We were most concerned that it might be Shingles again like he had after round four of chemo.  Neither of us thought that it was but Lara called Dr. Graham's office.  They said for Lara to give him Benadryl to help with the itchiness and for Lara to bring him in at nine.  We were right and it is just an itchy rash and why he has it is hard to say.  He could be having a reaction to most any of the medicines.  They prescribed another antihystemine that is really helping and that doesn't make him sleep all the time.

Sarah and I went on a shopping mission while Lara and Noah went to the doctor's.  Our favorite past time.  A nurse inadvertantly grabbed a plastic bag of Noah's dirty laundry and threw it away the last time Noah was in the hospital.  Sarah and I have been shopping for new summer pajamas ever since.  Today was finally a success.  We were able to find both Sonic X and YuGiOh pajamas.  I was so excited when I found them because I knew Noah would love them and he did.  It's so easy to make Noah happy with the simplest things.  It really is one of the things that I love most about him.

So much for Noah's day off.  The visiting nurse was here for most of the afternoon showing Lara how to administer all of the medications that Noah needs to be getting.  The medication is really pretty much the same that he's been getting all along but because he has received so much chemo, the counter balancing medications have to be increased as well.  Noah has to be hooked up to a pump with one of the meds for three hours.  One of the others is put in through his tubies just like always but has to be timed so that he is only getting one tenth of the dosage timed at one minute intervals.  The nurse warned Lara not to give it any faster because if she does Noah would be able to taste it and it tastes like gasoline.  Can you even imagine?

Noah is feeling pretty good considering everything he has been through but he does take up all of Lara's day all day long.  The good and bad news is that he is wanting to eat a little something about every hour.  This alone takes up so much time and is constantly creating a mess that needs to be cleaned up.  Lara's patience with Noah is extraordinary.  The two of us never seem to stop.  I try to help with everyday stuff like laundry, dishes, running errands and trying to keep Miss Sarah happy.  Of course when Lara has a free minute she is trying to give Sarah as much attention as she can.  Lara's day is seriously eighteen hours long everyday.  When she has nights like last night there is no beginning or end to her day. 

So even though we couldn't be happier about how well Noah is doing, it is no bed of roses for his parents.  There is always something to remember to do.  Noah's teeth have to be cleaned several times a day, his tubies have to be flushed out, his dressing needs to be changed on his venous catheter and the list goes on and on.  Caring for a cancer patient is a lot of hard work.  And this is when he's feeling well.

Tomorrow morning begins the stem cell infusion. Noah will not be allowed in public from now until his counts come back up.  I'm not sure how long that will be but I think I heard something about anywhere from ten days to three weeks.  He will go to the doctor's everyday to be monitored from here on out.  Andy returned back to Tucson tonight after a very long day working in Scottsdale.  He will join Noah and Lara for the procedure tomorrow morning.  Sarah and I will head back to Scottsdale so that she can meet her pre-school teachers on Thursday.  I will bring Sarah back after the meeting and will stay in Tucson until I have to fly home from Phoenix on Saturday evening.

That's the plan for now but you never know when things are going to change.  Never a dull moment in the Nelson household but I can't think of any place that I'd rather be right now.  It's really going to be hard to leave.  Grandma has to figure out how she can retire so that she can spend as much time with her darlings as she wants.  I'm afraid retirement is still quite a few years away but how I wish I could have more time with these little guys.  I love every minute that I'm here.

As always, keep Noah in your prayers.  Tomorrow is a really big day.

With lots of love,  Grandma

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