Update on Atticus

We saw the Oncologist Monday April 2nd.

They were really please with his neurological exam and muscle strength but concerned about his frequent head and eye aches, irregular pupil dilation, and "spastic" (my word, not there's) reflexes on his right side. They are all signs of pressure on the nerves. He is now up to 1.5 ml Decodron. And may just have to stay on them. It seems like every time we decrease it he is ok for a day or two but then the headaches come back. 

He's not a big med guy but when he gets the head and eye aches I always ask him if it hurts enough that he wants Tylenol. Lately he has been saying yes. Monday morning he cried it was hurting so bad. Tylenol didn't cut it and we ended up having to give him Lortab. I hate this part. Him being uncomfortable or in pain. 

He is scheduled for an MRI Monday April 9th at 10am. We check in at 8am. The MRI takes about 45 minutes the his appointment with the Oncology team at 1pm. They put a stat verbal read on the tumor results so we should know right away. Obviously the hope is that is has shrunk significantly but even a little would be good. 

The size of the tumor will determine whether we take path A or path B. If it has responded to the Radiation and Temodar (Chemotherapy) then we will do Temodar again. At 160 mg. The first round was at 60 mg so we are more than doubling his dose. It will be given the same way: made by us and given on an empty stomach in applesauce. He will take it for 5 days then have a 23 day break making it a 28 day cycle. 7-10 days after his 5th dose of Temodar his blood counts will drop. We will do that cycle 10 times. So basically for ten months. How his body responds the drop his blood count is unknown. Some kids do fine. Some kids find themselves in the ER every month due to fever. I'm staying optimistic. He handled the first round really well. In fact we thought he was totally symptom free until the last few weeks on his first round he told me, "Mom, sometimes I get throw up in my mouth at night!" We had no idea it made him nauseated. He never did throw up. So, if the tumor has responded, even the littlest bit, we will start Temodar and a seizure medication that night.

If the tumor has not responded or grown then we start option B which in all honesty, I don't really know what it is. And neither do the doctor's. I think it's a lot of experimental stuff which will require big discussions between Eric and I. They hit the tumor with the best first, Temodar, so if that doesn't work your kinda out of luck. Our biggest thing is pain and comfort. If Atticus is in any sort of pain or discomfort we'll stop or won't do it.

So Monday will be a big day for us. I'm really anxious. Just to clarify... the reading and size of the tumor does not indicate the growth of the tumor, just whether or not the Temodar in conjunction with the radiation effected it in any way. In some kids it shrinks a ton. Some, the tumor grows even with the Rad/chemo. 

On a positive note, he is doing really well. Aside from the "steroid" look and head/eye aches he is doing AMAZINGLY well. He is Atticus, a little more spoiled... ok a lot more spoiled, but aside from those things he is the same Atticus. Still keeps us laughing. Still stubborn. Still loves his sports and cars. Still too smart for his own good. He is so wise beyond his years. We often forget he's only 4. He is a MIRACLE. He is truly living proof miracles can and DO happen. We prayed he could walk on his own again... he can. We prayed he could run again... he can. We prayed he could play sports again... he's hitting baseballs over the fence. He's eating on his own, running up and down the stairs, balancing like an acrobat. He is a miracle. We have been given a miracle. I am humbled and so incredibly grateful.

Atticus the Superhero. 


He is accessed getting blood drawn for labs.


Shaking the blood tube for cute nurse Amanda.

Administering the Heprin

 

Despite the cancer, Atticus has grown not in a "I have cancer so I and forced into a mature life" but a, "I'm a 4 year old boy who thinks gross things are awesome, kisses are gross, and being wild loud and crazy is WAY more fun than being calm." He's growing up and I hate it ;). Where did my four year old go? I love you buddy. Even if you wipe my kisses away! I love you more than you will ever ever know. xoxoxo T&F (tons and forever)