Updates

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.

Ahhhhh what a tough day dreading watching the bags packed and them sitting at the door waiting for the cab to come pick up my boys.  The last few days went by so quickly .... watching Christian playing on the floor with Baby Nicholas made my eyes fill up with tears.  It seems so unfair that we have to be apart but we have no choice and I pray daily that God knows our hearts and that his will is to keep our boy safe and well so one day we will look back at these sacrifices and know that every minute we are apart was to heal our Baby ...

Today is November 7th and it was as if time has stood still .... I lost my cousin Danielle 6 years ago today.  How could it be 6 years? In the big picture she reminds me of how quickly life changes aside from this journey - she was gone in a flash - Heaven awaited her while we mourned for her loss. We still mourn and miss her - we love her and know that one day we will all see each other again.  How do the people I love most not see the big picture, forgiving and forgetting, loving and growing .... through suffering there is so much to learn.  I sure wish the people I love knew what is most important.  For me, it is getting my son well .... praying to God that he restores him completely ....

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.

So my boys leave tomorrow and I am so bummed out. Baby Nicholas' back arching thing got a little worse tonight so it of course has me stressed out. I am hoping this is a food issue since he is stuck on eating only sweet potatoes for some reason.  I will be monitoring him closely all day tomorrow to see if or when he is doing this to try to pinpoint why he is doing this.

Dear God,

Please keep your hands on Baby Nicholas and whatever issue, whether its from radiation or just digestion that it subsides right now .... thank you Lord for my boys being here this weekend ...

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.

Dinner was great and when we came back Nick finally saw Baby Nicholas take a few steps on his own.  I saw him do this earlier in the week so now we both have gotten to see his first steps and boy are they adorable. We all ended up crashing early and watching Toy Story 3. It was so nice seeing my whole family together - thank you Lord for the small things in life that mean so much.

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.

My boys are coming in tonight, Baby Nicholas is going to be so excited to see his big brother. It feels like a month since they were here even though it was only 10 days ago. I am already dreading them leaving again to go back home. These trips seem to go by quick leaving me sad and missing them terribly.

Dear Lord,

Thank you for the time we get to spend together, never do I take for granted the blessing it is to have us all together. Please Heavenly Father keep your hands on Baby Nicholas ...

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.

The therapist had him drinking off spoons, cups and straws in small amounts - it's just going to be a lot of effort to get him to "want" to drink a lot. It was helpful to go and I have new ways of trying to get him to drink now even though I have been trying so many different things....

Jen, Ryan and Robbie came by tonight and hung out until 11pm, so maybe Nicholas will sleep a little better tonight.

Dear Lord,

Please help give me the tools and techniques to get Baby Nicholas to want to drink so that we can be completely done with mickey button / g-tube feeds. It will be such a huge relief to be done with this! Thank you for all the progress you have allowed our precious boy to make ....

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.

The days are starting to all blend together and I miss home and everyone so much!

In the photo is a card and a key chain made for Baby Nicholas that is now placed on his diaper bag. It was made by Nick's dear friend Jen (Schenk) Hill - they grew up together.  She wanted us to place this on his bag and so we have and it says faith, the stone is for strength ... thank you so much for thinking of our boy!

Day 10 of Proton - complete! Monday and back the the grind, port accessed and labs drawn.  A Visit with Dr. Indelicato just to go over how Nicholas is doing.  I hope this week flies by because I miss my family and Nick and Christian are coming Thursday.

I find myself kissing my boys head and thanking God for him all the time, praying that God continues to heal him and protect him from this whole process.

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!

Also, Thank you Auntie Nicole for the Trick or Treat Shirt - it fits and its too cute!

Oh and I almost forgot - Nicholas actually drank out of a bottle tonight --- first time since PICU on May 23, 2010 .... everything happens in God's perfect timing .... thank you God!

We have been lazy today just relaxing and shopping a little bit. Baby Nicholas' just gets so excited going into the toy section at stores and he identifies with anything Toy Story and just goos over everything. It's actually funny how excited he gets.  Everyday we have Toy Story 2 marathons and we just watch it over and over and he lays there and really intensely watches it.  Its super cute he just stares and almost gets through the entire movie. It's the only movie I have even seen him so interested in, he really loves it. I can only imagine this DVD will have miles on it here in Jacksonville.

Dear Lord,

Thank you for every moment I have gotten to spend with my boy - he is a blessing and I adore him. I hold him so tight while we sit under the stars and I pray and beg you to just let me raise him .... Please God I take nothing for granted, I love him so much .... please hear my heart Lord.

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!

Day 8 of Proton - complete! I wish my mind was completely at ease with everything that happened this week but I am just not settled with any of it. Today was the first day with the new radiation plan.  So another day of delayed fasting for the little guy. Ahhhhh I wish I knew why this all happened. Just thankful that Dr. Marcus is no longer our doctor.

Day 7 of Proton - complete! I met with my new Dr. today ... Dr. Indelicato AKA Dr. Danny - I was in shock listening to the risks and side effects that I was told were not a problem from the previous doctor. The negligence is disguising to say the least.  I was thankful to finally know the truth but this just should not be happening 7 treatments in and then to find out the new equipment is still not here so today they still used the other plan. I hope no parent ever experiences this process like this - this is just pathetic. My son's life and the one shot we have at his curative and no one seems to be on the same page and no one knows what is going on or why this happened. I have so many concerns, I don't know where to start .... this just shouldn't be happening.

Day 6 of Proton - complete! Well Annie is here today and she came and sat with me and I told her what happened last week. She immediately agreed and switched my doctor for me. I left feeling relieved like a bad weight was lifted off me. Then 2 hours later she called me to tell me that our time switched and when I asked why she said that they were waiting for new equipment because his radiation plan had changed. I was in shock, why I was not told is scary and this is just unacceptable that this was in the process without any notification. How did this happen? I called St. Jude Dr. Merchant said he was aware but to what degree? How is there changes on a radiation plan and I am the last to know - this is my son's life? I am miserable and confused.  Why did they allow him to be treated for the last 6 treatments without telling me they were changing this? When I asked I was told that Dr. Marcus admits that he screwed up. I just don't understand how that's acceptable!

PS He's got eyelashes finally ....

Day 5 of Proton - complete! Today even though all was on time and everything seemed fine I have been so uneasy about my meeting with Dr. Marcus and so I reached out to the RN running this program to let her know that I was upset and I wanted a new doctor on my son's case with new eyes to explain everything to me.  I just didn't feel like I was being told the truth. I have no peace with any of this right now. I think she's out of town so I hope she responds.

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.

Thank you to my new found family at Faith Bridge for my short stay here! Thank you for your prayers today over my boy.

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 ...

The picture is of Christian standing in front of Zoltar - if you ever saw the movie BIG with Tom Hanks its the machine that give him his wish to be BIG. I just thought it was funny so I took a pic.

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.

Day 3 for radiation, I feel nervous and uneasy about the direction with this doctor here.  I am hoping that yesterday was a fluke and that Nicholas does not get sick again.  This hasn't been a good start here and today was the first day that ran on time and seems to be moving smoother than the last 2 days.  Nick and Christian are flying in today so I we are excited to spent some time together here in Jacksonville.

 

I posted this photo because before we arrived I searched craigslist for a crib, glider and and changing table. When I found a post that had it all and I said I will take it, no time for negotiating - I just wanted to secure it and told the seller that I would only be there for 8 weeks for treatment for Nicholas and that I would gladly give it back after so that they could re-sell it. When the seller responded, today I am still shocked - she said I want to give you my furniture. I still thought it wasn't real. But it was ... she came the day after we arrived with tools to help assemble the crib too. What a blessing and what a kind woman .... thank you Natalie and thank you to the Ruge family for wanting to help us.... I wasn't looking for anything for free and yet you blessed us with this and as I told you that I will make sure the next family that comes after us is given this furniture so that your blessing is passed down to another family that needs it that will be here for treatment.

Thank you Lord for good people with good hearts .... thank you for Natalie!

Day 2 of Proton .... today started out bad because Wednesday's they start an hour later and they were also having problems with the X-ray machine, so lining up the kiddos is taking longer than it should. Its tough because they fast for 6 hours before every appointment and we got there at 9:20am for a 9:45am appointment and did not go back until 11:30am.  Then once back, they once again had X-ray machine issues that kept him sedated for 2 hours, typically it's 30 minutes. He woke up again HORRIBLY because it wasn't the same anesthesiologist and he didn't know he woke up so quickly. They now know that he needs a little more before they move him. However he was a mess afterwards.

Then the staff told me I needed to wait because Dr. Marcus needed to see me. My day went from bad to TERRIBLE. Dr. Marcus walked in and said, I need to apologize to you I did not see your son's scans before we met last. I guess you could say I was in shock, upset, confused etc. How in the world does a Doctor look you in the eyes and consult with you about your child's life and then say, I did not look at his records? He then said his left cochlear (left ear ) would have significant hearing loss.  I then asked again about his hormones and he said they should be fine. I couldn't think straight to ask any other questions, I was simply caught off guard with this news. He told me we can get creative with how the radiation is delivered to spare his left ear .... I thought to myself did he honestly use the word creative just now ... this is my son's life here.

I left upset, I feel lied to and I feel like I can not trust this man as my son's doctor.

On top of that, I came home and Nicholas threw up and then passed out.  It was too much for him to be sedated for so long and then eat. What a day .....

 

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.

While sitting in the lobby waiting I met a man named Harold Stanfill, he asked me what I was reading and I told him it's "God's in the Tough Stuff," he said is it a Christian book? I said yes, he gave me the thumbs up. His friend to his left said, he's a preacher. The preacher then said, he's a banker and then points to his right and says he's a lawyer. Someone over my shoulder said, the good the bad and the ugly.  I said it sounds like a joke, then after walking away it put into perspective that cancer attacks anyone.  I told Harold I was coming to his church this Sunday.

Dear Lord,

Please keep our boy safe through these treatments.  It's going to be tough for me to watch him get sedated in my arms every day so please Lord ... give me strength to handle all this. Please let these treatments be effective and never let cancer ever harm our little boy again. Through your precious Son, Jesus Christ I pray.

 

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