Update  #  13

 

We had a great visit with Ethan this Easter Sunday.  

Even with his "periods", his up beat attitude and 

desire to make us smile / laugh amazes me.  He

truly is an amazing 5 year old.  Here are a couple

of photos from our day together.  And as always, thank 

you all for your prayers and words of support.  And a 

special thanks to Tom & Karen for listening to me go on

yesterday - thank you.

 Ethan looking at his Easter Book

 Grandpa and Ethan on our Easter Egg Hunt

 The maze at CHLA that Ethan really enjoys visiting

Grandma and Ethan "swapping" stories.      

Update  #  12

Wednesday - Started treatments, all went well. Leave CHLA for trip to UCLA about 7:30 am. Receive his treatment then get transported back to CHLA about 12:00 noon. The travel and the treatment tend to tire him out so the visit outside this pm was short but enjoyable. Thursday - Day 2 of treatment with the same schedule as Wednesday. Today did not go as well as day 1. Had issues with the port, very painful and just did not function well. Upon return to CHLA he continued to have port issues, after lots of painful poking and prodding, a new port was installed and seems to be working much better. Ethan was very tired, emotionally and physically this pm, but his day was not over yet. About 6:00 pm he was transferred to the 6th floor. Just what he did not want and he let them know it. Treatment schedule will remain the same, Mon. through Fri. for about 6 weeks. In addition, he will also receive physical therapy each afternoon. We will see how this goes and how he deals with this new schedule. Thanks to all for your continued prayers and support, we have great friends !

Update  #  11

The week-end finds Ethan getting some of grandmas "little sandwiches" that he has always enjoyed. He continues to eat like he is famished, partially a side effect of the steroid he is taking. He was able to get on the floor mat and play again, he enjoys being out of the bed. His fine and gross motor skills seem to be getting stronger. He also went to the playroom again and was also allowed to go to the outdoor patio by wheelchair. Once there it was clear that he has really missed being outside! The playroom and patio did take a lot of energy and he was very tired when he returned to his room. No new procedures this week-end but Monday starts a new week and we will be taking it day by day. Rumor has it that in the near future he might get moved up to the 6th floor. This is great news, floor 6 is rehab and he will get several hours of therapy daily there.

Update  #  10

Ethan has been moved out of PICU, His new room has vitals checked every 4 hours instead of hourly - much nicer. Except for one IV and his machines that monitor vitals he is "unwired" which he really enjoys. With his physical therapist he got up and did some walking today. They went to the playroom for a tour and then back to his room. He was also out of bed on a floor mat doing legos and some puzzles with family today. He enjoyed the floor time almost as much as the adults did ! The LA Kings came to his floor and did visits today, but missed him as he was doing his walk. Have been told that they and several Lakers often visit on the QT - very cool .

Update  #  9

Thurs. (21st) had another MRI and a CAT Scan to check how the lesion looks and to see how the plan for his procedure will progress. All seems to have gone well. He is tired and sleepy but still wants to eat. This is part him and part the steroids which cause hunger. He ate most of the pizza, fruit, and pudding and ended his meal smiling.

Update  #  8

Wednesday (20th) he has had the port put in and it was successful as well. He is sleeping soundly and has eaten after the surgery this afternoon. No food for 4 days Fri. - Mon. was one of his worst issues. It would be for me too ! Before surgery he was up walking with a physical therapist and making progress. Also worked on fine motor skills and sitting up with little support.

Update  #  7

The shunt was put in Monday (18th). Everything seems to have gone well. A biopsy was not done due to the location and type of lesion. Hopefully the shrinkage will continue with the steroids and the shunt. A "port" is going to be inserted in his chest to implement medication and take blood on Wednesday. This will make all of his procedures much less painful. He still cannot walk or talk as clearly as he did.

Update  #  6

Diffuse Intrinsic Pontine Glioma (DIPG) is the name of the lesion (tumor) they believe he has. Prognosis is not good, but there are some clinical trails the "team of 10 doctors" are going to explore and then discuss options with the family.

Update  #  5

Ethan's speech and motor skills have improved, but still not the same as prior to the MRI. He has been taking a type of steroid which has reduced some of the swelling of the "lesion". This in turn has allowed the fluid in the brain to drain into the stem as it is supposed to. When the fluid drains the pressure is reduced allowing the brain to function. They still may do a shunt on Monday, it depends on the drainage

Update  #  4

CHLA has determined he has a "large" growth at the base of his brain. It is pushing on the spinal area and causing swelling in other areas. They do not know if it is cancerous or not. The neurosurgeon was looking at the images and came up with a "team" plan. Ethan hasn't been able to speak except for a couple of slurred words since the procedure.

Update  #  3

After the MRI, they sent him to the emergency room at their hospital. The doctor on duty took a look at the MRI images and recommended a neurosurgeon was needed. So...after finding a hospital, that would take the insurance, he was taken by medivac to the PICU at the Children's Hospital LA.

Update  #  2

 Ethan was diagnosed with strabismus (weak eye muscle) in December.  He received glasses for this condition in January, but things still seemed to get worse. After some delay, he was scheduled for an MRI at Pomona Valley Community Hospital on Friday March 15. We have been concerned with his loss of balance and some other physical issues and now so have the doctors.

Update  # 1

Wanted to give everyone an update on my grandson, Ethan.  Sorry I have not got this done sooner, but will follow with the key events as often as I can.