Well we had a brief stay in the hospital last week. Alec ended up spiking a fever and with a mediport we can never chance it because we don't know if it is a line infection or not. Of course as usual though after spiking a 102+ fever Mark trecks out in the snow and sleet to Schnieder and upon arrival no fever. But his anc dropped to 575 from 1,400 earlier that day. He needed platelets and a blood transfusion during our stay though.
We were released on Friday and Alec had his PETscan. That was also a scary time. Not the scan itself, but what I encountered. For those who are unfamiliar with mediports, when not accessed heparin need to be put in the line to prevent clotting in the mediport or there would be big trouble and the line would be useless and have to be pulled.
In any case, I left him accessed when we were released from the hospital because we were going to get sleepy juice, aka sedation for the scan. I told the anesthesiologist while he was still sleeping he can deaccess him to avoid yet another painful ordeal. He agreed.
I was sitting in the waiting room and this feeling came over me, I can't describe this feeling, it was so intense, like someone was telling me not to have this man do that. So I interrupted the technician who was doing the scan because I wanted to stop the anesthesiologist from de accessing him. He opened the door and I told him nonchalantly to leave him accessed, just heplock him because we have some blood work to do over at Schneider’s, he said oh I was just going to flush him with saline and take the needle out I have no heparin. WHAT!!!!!!!!
I tried not to freak out but was ready to ring this guys neck, no heparin how he can not have any heparin on his little wheely cart. All that kept me positive was his platelet count was low. Then they had to transport us by ambulance over to Northshore hospital, the main entrance because we were over in the Feinstein bldg; and when we got there I told them I needed 5ml of heparin put in his mediport ASAP. Then a short time later we were released I drove like a maniac to clinic and had them pull out what they out in to make sure there was no clot in his line, then reflushed and heplocked.
Any how we are home safe and sound now, Kevin is sick though :0(
Alec is back on his GSF shots daily and his chemo is on hold until his counts rebound a bit. He is still on Bactrim, Acyclovir, Clyndomiacin, and all his wholistice drugs.
Well Sean is crying and Kevin needs a temp checked. Bye for now,
Amy

Please take a moment to print out, color, mail or drop off to me the butterfly. This is not just any butterfly, it represents brain tumor week in March. Please color not only for Alec, but for all those who have been effected by brain tumors. In memory for those loved ones we have lost and in honor of those ones who are still fighting and all those who are in remission but will spend the rest of their lives with uncertainty.
To dedicate your butterfly to a loved one please write their name on it. All the butterflies will be hung from the ceiling in Alec's room.
Lets get everyone involved schools, libraries, churches. At the end of the month I will post a picture of Alecs room along with the total number of butterflies.

Some Very Special Friends

I wanted to share with you just some of our very special friends we have met along the way. You hear me speak of them often. Hannah and Alec in the play room with Kim (Hannah's mom). Also our friend Stanley, Alec and Stanley enjoying a game of memory.
We had a lonnnnng day at clinic yesterday. Alec ended up needing a blood transfusion becuase his hemoglobin was low. He is transfused at 80 and below; below 20 for platelets.
He seems very tired today, he consumed about 800 calories, not nearly enough to make me happy. He didn't vommit as much today, I am trying to give him the phenergen every 6-8 hours.
While at clinic they drew his immune functions, again. No wonder he needed a blood transfusion, 8 vials whenever we walk in he door.
Being that he is not eating all that well, I wanted other tests run as well. A recheck on his cortisol which was 14.4, yeah!! And his albumin, copper, magnesium, calcium, and thyroid.
All came back fine, well no word on he copper or t-cells yet.
Well gotta run, chemo calling.
xoxo

MRI Results

I wish this posting contained better news. To date Alec's brain MRI's have been clear, that has changed. There is some patchiness in the cerebellar region which may represent radiation necrosis. Then slightly to the left of the medulla there is an abnormal supratentorial enhancement. It's noted as recurrent disease. The spinal lesion has not changed, it remains the same size.
His Dr. is calling these findings possibly radiation necrosis, or new tumor growth. The brain tumor board is meeting on Tues. to discus it further and to get other opinions on it. Meanwhile we are being told that he will be rescanned in another 6 weeks instead of 3 months. Then I was given some lame excuse that being he was scanned in another facility it makes it hard to compare.
Bull, pardon my hostility, but I hand delivered the scans. They have them how hard is it!!
In the interim I have been in touch with NYU again, and I am sending a copy of his scans to the Dr. we have been seeing there. She mentioned doing a PET scan to see if these new findings are in fact tumor regrowth or if it is in fact just radiation necrosis. Alec will be injected with a sugary substance, being that tumors feed off sugar the tumor would gobble up the sugar and highlight. Confirming or denying findings. This test was never discussed with us by his Dr. at Schneider.
I just feel they are giving up. The protocol he is on was because it was something discussed with NYU. I have lost all faith in Schneider Children's Hospital.
Meanwhile his spirits are great, his walking is great with help. His tick seems to be a bit more pronounced again. His hearing aids were readjusted agiain, Ihave to give them about a week, it has to do with compression his Dr. was telling me. He may need aids that don't compress as much. We will see how he does though.
I am going have his t-cells drawn in a couple of days, hopefully we will know by Friday how they are recouping.