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Friday morning I awoke once again with the birds, Ezra and I headed over to the hospital to have another PICC line put in. I was really upset to find out that because he was out patient he wouldn’t be receiving any sedation, not even conscious sedation (versed).
We waited for an hour while some numbing cream sat on his arm. Then I had to take him back to what looked like an operating room, and leave him there, with a bunch of strangers. I felt like I had been punched in the stomach. Every other time he has been taken away from me he has at least been on some sort of mild sedation. I just kept thinking about how scary it must have been for him. I really hope he forgives me for all of this some day.
They were able to place the PICC line in and we headed home.
Later in the afternoon we went back to clinic to receive chemo. After another hour wait, they finally just decided to give Ezra his chemo, we were waiting for a seat in the infusion room, and a seat never opened up.
Ezra started Interim Maintenance on Friday. It is 56 days long and will consist of the following.
Vincristine, & Methotrexate (chemo) through his IV on days 1, 11, 21, 31, & 41. Then another lumbar puncture with Intrathecal Methotrexate on day 31.
So we at least get a break from lumbar punctures. He also is only taking one medicine orally and only 3 times a week. Which I know he is grateful for.
Side affects for this phase are mostly lowered ANC, mouth sores, and nausea. He is too young to receive the anti-nausea medicine they typically give to older kids. Something about it causing seizures in babies. So lets hope he doesn’t get nauseous!
Last night I lost my cousin of 59 years to the fastest growing brain tumor, glio blastoma, that was operated on June 9 and now he is already gone as it came back that fast. I would like to think as much as he loved children that he is just one more guardian angel watching over your Ezra! May God bless you all as you go through this next round and please know I still have you in my prayers...and still trying to get Oprah into this since day one of finding out. Hang in there and bless you both! Hugs to Ezra! Karen
ReplyDeleteAwww I am still praying daily for him (HUGS)
ReplyDeleteWe are praying for Ezra all the time. ((SUPER HUGS))
ReplyDeletepraying for Ezra all the time! Bless his heart and yours too!
ReplyDeleteGo Ezra!
ReplyDeleteDo you know how give medals and money to athletes, who don't really do anything amazing. well i think we should be giving money and praise to children with cancer because they are truly amazing. Ezra courage and spirit are amazing!
bless that ezra's little heart. he's so precious...and i'm glad the picc went in without fault. you can add the surgery room drop off to the list of "things he needs therapy for later"...i have one of those too. praying for ezra and that he would be strong and full of good tummy times!
ReplyDeleteI have just found your blog, although by now I have no idea how :)
ReplyDeleteWhat a beautiful little boy.
I've just added this site to our blog list of 'Special Assignments' and will be eager to hear that good things are going on with Ezra!!!
Lucy
Oh I'm really sorry at the awful time you and your family are going through. I can't believe that they didn't give him any form of sedation while they did the line.
ReplyDeleteMy heart goes out to you, I have a child the same age, he was ill when he was newborn but at least he won't remember any of it.
Take care.
Oh, what a load... he can't this medicine and he can't take that medicine. ouch. So he Zofran doesn't work for him. Oh man!
ReplyDeleteGood luck, this is a good time, by the end of it we felt like we had our daughter back a little bit.