January 2, 2014


Nathan received vaccine #5 today.  As usual, it was a long morning.  Nathan did extremely well getting his vitals, but his blood pressure and pulse were high.  They are usually high because he is screaming and crying so they chalk it up as him being upset.  Today he was a champ and did great getting his vitals, so we are not sure why they were elevated.  He told everyone about his doctors kit and walked them through how to do it...quite comical actually.   Dr. Jakacki was concerned that he was tacychardic today.  He was also very flush and had a rash all over his arms and back.  Probably just a heat rash or associated with the heart rate.  She was hesitant to give the vaccine today with his symptoms, but decided to do a normal cbc blood panel and blood cultures.  Blood counts were normal, so she gave the ok to get the vaccine.  We will wait to get the cultures back tomorrow to see if there may be a bacterial infection brewing.

We are in an extremely critical period right now.  The body is either accepting or rejecting the vaccine at this point.  Overall, Nathan is doing extremely well, but we have seen a slight decline in three of the main things we monitor hiccups, sleep, and coughing.  In the past, when Nathan has frequent hiccups it is because there is tumor growth and irritation to the medulla.  Unfortunately, Nathan has been getting them once or twice a day and had them  5x yesterday which is a lot for him.  His sleep has also seriously declined since he got the last vaccine three weeks ago.  He was sleeping through the night and naps and now we are back to being up a minimum of three times a night, some times as much as 5 or 6.  Unfortunately, we basically sleep train for 10 days, he gets better for 10 days, and then we start the whole process all over again because he gets so sick from the vaccine and can't be left to cry because of vomiting.  We are hoping that his sleep is not indicative of tumor growth as it has been in the past and things start to settle down soon.  We have also seen a slight decline in his ability to coordinate his swallow.  We will continue to thicken the liquids a little more to help him swallow safely and hopefully increase volume.  He is only taking in about 1 oz per day by mouth.   All of these things are concerning, but as Dr. Jakacki said this will be a yoyo and we just have to wait and watch.  It is so complicated to gauge because there could be pseudo growth due to the vaccine and the tumor is actually shrinking.   Only time will tell.  His next scan is on January 23rd which the nurse told me today is usually when they can tell which way this is going to go.

After this vaccine, he will receive 3 more as long as his body continues to accept it and not have adverse side effects.  Our goal is to get to vaccine #8 on March 6th.  If we get to that point, it is a very good sign that the vaccine is working and we will remain on course.  After the 8th vaccine, we will take 6 weeks off and then get the vaccines every 6 weeks for two years.  They just had their second patient complete the two year cycle.  He also has a low grade glioma.

Now we sit, wait, and pray.  Mike and I are definitely concerned at this point, but who knows what tomorrow will bring.   We have to remain hopeful that his body will continue to fight as it has in the past.  It has been 16 weeks since his last chemo treatment and he is doing GREAT!  That is extremely encouraging!

These days are long and hard and full of worry and fear.  We have to continue to trust great science and God who we know will always take care of Nathan.  Although we are tired and it is difficult to get up all night, it is in those quiet dark moments that we talk to God and we know he hears us.

Nathan loves playing with play doh and coloring.  It helped pass the long wait today.

After two years, Nathan finally steps on the scale without crying and screaming.  Pap has been training him while we wait after he gets the vaccine.  Your work is paying off Pap!!