Updates
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Day 15 of Proton ... Done! We are half way done today! We also had a conference call today with Dr. Merchant, Dr. Laver, Dr. Bakhazi, Dr. Indelicato among a few others to address all our concerns. As most of you know I am much more involved with Baby Nicholas' regimen and his care so my eyes miss nothing when it comes to my child. We addressed how propofol is administered since Dr. Bakhazi is a very busy man at St. Jude and I felt like he needed to just bridge the gap between the two locations. The way St. Jude administers this drug verses the way they do it here in Jacksonville is very different. At St. Jude never is a student doctor the one holding the syringe, it was always the same staff and Doctors giving the children their drugs. Here, it is a different person any given day and that makes getting into a pattern very difficult. Dr. Bakhazi said their is a learning curve with each child and I agree but there is only a learning curve when the same person is administering the drugs daily to understand the child. They push too fast here and after speaking with numerous families that have been here from St. Jude - they too agree they never experienced their child being sedated so quickly and it alarmed them. I hope they make changes to paying attention to detail with the children's individual needs in order to sedate them safer.
More importantly the conversation about baby Nicholas' radiation plan changing - Dr. Merchant said he had numerous conversations about this and believes the main are of the tumor bed was not compromised. I realize I have to trust them at this point but that doesn't put me at ease with how this whole situation went down or how it was handled. I will never have peace knowing that mistakes were made and not knowing what the future holds for my son. I pray no one experiences this process here in Jacksonville like I did. I whole heartedly know that I was lied to by Dr. Marcus and that he was not straight with me and that he went back to the drawing board and made changes to my sons mapping for radiation of his brain without notifying me of it. I will never understand why this man did not tell me a week ago that he was in fact changing my sons plan .... I will never know the truth - what I know is that everyone is paying attention to this situation and I wish it never happened - this is my baby - my son .. he's my world ....
We stopped by Kim's for a quick minute at the end of the night. She put Christian's Harley cap on him ... lol too funny.
We all packed up and went guess where .... Jacksonville Landing for lunch today - it was warm enough with coats on to sit outside and eat. It was a normal day just hanging out and we all hit Walmart since the closest Target is 20 minutes away and over a bridge I won't dare drive over again. lol at least I have gotten use to the smaller bridges now.
Day 14 of Proton - complete! After coming back from treatment today Baby Nicholas napped and then we went out for an early dinner back the the Jacksonville Landing. It has been 40 degrees at night and 60 during the day - it's a cold front and it just so happen to land here the weekend my boys are here. Oh well, it's like they brought a little Michigan with them.
Day 13 of Proton - complete! Treatment is going fairly smoothly today and we have another check up at Nemours Clinic. We went over everything and I told him I was a little concerned about Baby Nicholas arching his back but I still can't rule out it being acid reflux issues. So we monitor it.
Dear Lord,
Day 12 of Proton complete - his neck is starting to get a little red from it. Today we have a speech therapy appointment to just get more techniques to get him to "want" to drink. We already know he can drink - he just doesn't do it in large volumes so we are still stuck bolus feeding him for fluid intake only.
Day 11 of Proton - complete! Today I followed up with Dr. Laver (From St. Jude) from last weeks visit and hoping to handle my final questions about treatment. I feel like this whole process has been an absolute mess down here and I am trying so hard to keep it together and stay positive.
Happy Halloween! We didn't do much - we did have plans but decided to nap together and be lazy all day. We played and took a few walks outside today - the weather was beautiful. I miss Christian, we always crave pumpkins together - that's our thing that we do and I always make pumpkin seeds and we bake and decorate cupcakes for his whole class together ... I am so sad I missed all that with him this year. But again I will make any sacrifice I have to for our boy, my Nickybear ... do you have any idea just how much I love you ? I could never fully put it into words and I will always be whispering it to you all day long while kissing your precious face!
Day 9 of Proton - complete! The kids all dressed up in their costumes at the center however, Baby Nicholas never wore his because he is just too big for it size 12-18 months was so tight he cried. He is straight up 24 month clothes now, he's just so big! So we returned the outfit in the photo because it was sin tight like lycra straight leg stretch pants in high school, poor lil man. So we are skipping the outfit this year. We got the photo, isn't that all we needed anyway lol. So we are de-accessed (his port) and thankful. A few days off to be lazy, lots of cuddling, naps and walks!
So my boys left today, I promised Harold I would come to Faith Bridge Church for service and so I packed up Baby Nicholas and we went! It was a great service but my little man got a little fussy half way through and I had to walk out and watch the rest from the lobby monitor. Harold and his wife and friends took us to lunch. It was nice to be around people that cared about what we were living through and offered support and friendship and prayer.
We are all together!!! I love my family and I love spending time with my family! Christian and I went and got pedi's just because he loves getting his feet rubbed. lol it wasn't that good but it was an excuse to spend a little time alone with my boy. We went back to the Jacksonville Landing for dinner tonight and it was great. the weather was a little off or we would have taken a water taxi over. Christian and I took it back and Nick drove with Baby Nicholas so at least Christian got to go on it once. I can't believe the weekend is over - I just wish I could stretch it out ...
Day 4 .... and you are 13 months old today too! So glad it ran on time and Baby Nicholas' port is de-accessed today. That means he has no lines running from his body at all! We had an appointment at Nemours with Dr. Sandler just a normal check up. It went well and we have the rest of the weekend together.
We went to the Jacksonville Landing across the river today and had lunch at some Italian place and it was the first time we sat down with Nicholas in a high chair at a restaurant like this and he did well. It was a nice change of pace from the months of being inpatient at St. Jude.
Well Baby Nicholas and I are settled back in Jacksonville for the next 6-7weeks. Today he had his first appointment at 10:45am. This first appointment is longer than most because it is the first time setting him up so we were there till about 1:30pm. He got his weekly labs and we will know tomorrow what his ANC is. He woke right up after his treatment, most kids sleep for a little while but I told the anesthesiologist that he wakes up easy and they didn't believe me until they saw it. She told me as soon as they moved him they needed to give him a little more just to keep him sleeping until he got to recovery.