Updates

Day 28 of Proton...complete! Today is a big day and big week in the lives of the little people I know and follow from our protocol SJYC07 at St Jude ... I ask that you please pray for Megan P. (photo to the right) She has under gone numerous MRI's in the last month and a half and so I ask you all to pray for everything to be stable and well.

I also ask you to pray for another little girl named Avery C. (photo to the left) She has been placed on a new chemo regiment after a test last month revealed that the cancer was in your CSF... this week pray fervently that those cells are no longer existing!

 

Lastly I ask that you pray for our friend Christian S. who just got to St. Jude today for this follow-ups from finishing Proton radiation. so many children to pray for this week .... and please still pray for Lyssie and my little man Baby Nicholas ....

To follow any of these children's stories please go to the link above FRIENDS WE FOLLOW for their updates ....

Ready for the week to begin - our last week here ... mixed emotions but glad this part is almost over. My boy and I were lazy watched movies, played extra hard so hard he couldn't catch his breath he laughed so hard. Oh how I love my Baby Nicholas....

Thank you Lord for days like today that I just could enjoy him completely....

I dropped my boys off at the airport and the little man was so tired I came straight home for him to nap. Nick's best friend Johnny, (Dad of Kendal L from friends we follow) called to give us an update. I just cried, I just hate cancer. This beautiful 16 year old has been battling this monster so fiercely. It's so hard to watch her have to endure such horrible pain. Then I sit here online and read about Lyssie, she's losing her ability to walk and she's deteriorating before their eyes. Cindy, (her Momma ) I just break for her .... today lots of tears ... and I am anxious over going back to St. Jude for scans and tests.  Today has just been a tough day for me. Please pray for Kendal and Lyssie.

We had another lazy day since my boys are leaving tomorrow. I was glad that the schedule for fireworks here on the river were misprinted and they actually were tonight and Christian got to see them from the balcony.  I can't believe we leave here next Sunday to go back to St. Jude. This week is going to be so weird - everyone I know from Jude is gone. I hope this week goes by fast.

Happy Thanksgiving - We are BLESSED! nothing more can be said about how grateful our hearts are today that our family is together - even though we are so far away from home and we miss everyone else ... we are together and BLESSED! Today, I just sit back and count each blessing and thank God for everything He has pulled us through ....we only ask that you continue to be with us along this journey and you keep Your perfect healing hands on our little boy! My precious NickyBear!

So today a verse I memorized with Stacy Whitefield in our first bible study comes to mind today ...

1 Corinthians 10:31
So whether you eat or drink or whatever you do, do it all for the glory of God.

I will leave you with 2 posts I read today the first is from Christie - Aaron Bell's Mom (Aaron the Amazing):::

My heart breaks as I think of the parents who will not have their child with them this Thanksgiving and upcoming holiday season. My heart breaks for the families who know that this will be their last Thanksgiving together. Some seem to be able to be thankful for the time they had with their child. They have become leaders in the fight against childhood cancer. They are doing wonderful things to honor the memory of their child and raise awareness. Others seem to have a much harder time dealing with the unfair, wasteful loss. I pray that their pain can some how be eased. I pray about how I would act and react if it were me. May God's presence be felt by each family who has lost a child to cancer or for any other reason.

This one I find so dear from a 19 year old named Maggie we just adore at St Jude:::

I hope that you have a great Thanksgiving. I, on the other hand, will be having the best Thanksgiving I have ever had.Because for some reason going through this has allowed me to see the beauty in things I had forgotten were beautiful.

Day 27 of Proton... complete! The pic above is Dr. Danny Indelicato checking in on Nicholas. So nice to have his port de-accessed for the long weekend ahead. We went out to dinner tonight to the Charter House... while I got my little guy ready I grabbed a shirt that Auntie Nicole (Baby Wade's Momma) gave me when I went to South Carolina for his funeral. It brought back so many emotions.  I remember her saying take this for Nicholas, it's too hard for me to see and it will fit him while she fought back tears. I remember the last time I saw Baby Wade wearing this shirt and I cried putting it on Baby Nicholas. I realized how much I missed Baby Wade's smile and Nicole and I being able to talk for hours about our boys ... I thought of what he would be like today - what little milestones would he have been achieving now ... I cried for my friend who is such an amazing mother. For her void, her precious boy that nothing will replace.  I just wish we lived in a world without cancer, yes I know one day we will ... but here the suffering of so many children is numbing and it grips my heart like a fist.  There simply is nothing worse than watching your child endure and suffer.

There was a girl at the beginning of our journey and I reached out to her Grandmother whom is more of a mother actually to her. For me Lyssie's story was my hope story and when she relapsed - my heart broke for her - for her family - I couldn't believe the news and I still can't comprehend it all.  When Nicole lost her son 7 weeks ago - I felt like if prayers heal - then why is this all happening ... I was reminded that God uses our children to save others - and I sit here saying why mine - but God probably said the same thing about Christ but still had to allow his son to suffer to gap the world with heaven and to allow us sinners redemption.  I was reminded at Baby Wade's service how many lives this little 13 month old touched - how many people that never pray got on their needs and spoke to God because of him .... I don't know why this all happens - I wish it just didn't.  Please pray for Lyssie.

Day 26 of Proton ...complete!  So weird being the only St. Jude family here now ... I miss everyone! So I went it today to the Atlantic Eye Institute to see Dr. Huss after 1 1/2 hours of testing he told me that I have physiological anisocoria. What that means is that My pupil is abnormally - normal. If that makes sense - it's been like that as far back as I have photos here which is at least 10 yrs plus. So there is nothing to be alarmed with he said and that nothing is wrong.  Some people just have one pupil larger than the other and its not noticeable unless I am in the dark, day light you can't see it ... glad that's done and over with!

Thank you Lord for watching over my family ... My almighty God ... thank you for each day you give us!

Day 25 of Proton...complete! And my boy is 14 months old today!!!!! I see this license plate everyday at our housing at the Stand, I just love this plate. Wow 5 more left now .... it was Christian S. last day today so we are the only St. Jude family still here right now. I am just starting to pack and get ready to ship everything here home.  Our week at St. Jude starts on Tuesday December 7th and our week ends from what I was told December 10th. We are anxious to get all these tests done and start oral chemo that will last 6 months. We cant wait to go home for Christmas and just be in our home again as a family. It's been a half a year since that has happened! I wish I could say time flew by - but it has felt like the longest 6 months of our lives. With that comes so much too... most of the Jude families all say how they fear going home the safety net of St. Jude being minutes away and all the family support from everyone else living the same lifestyle now.  Lots of Skyping in the near future!

Dear Lord,

Please Father keep your hands on our boy, heal him daily and let the next 5 treatments breeze by and let our tests all be perfect when we go back. We trust in you, whom loved the world so much you gave your only Son... Lord how you know our suffering as a parent ... may you continue to keep watch on our special boy.

Day 24 of Proton...complete! What a weird day since it's a Sunday and the whole city seems asleep! We got in and out quick today so now we can go spend the beautiful day together! Going to dinner tonight at guess? The Jacksonville Landing....

It was our kind of going away dinner with Kim's family and the weather was just nice enough to sit outside and eat.

 

It's Saturday and my boys are all here!!! I am so excited to see my family! We did nothing but nap, hang out and relax all night!

Thank you God for the little things that are now just so big! They are such blessings and I am so grateful!

Day 23 of Proton ...complete! I asked Steve the tech that works with the children here to take photos of Nicholas it the radiation gantry so that one day I can show him what he went through. By the mercy of God he will one day read this story just as you are - like a visitor that can not recall any of this horror. I pray that with my whole heart.

We met with Dr. Aldana (Our Neurosurgeon here) to remove the back left fiducial (screw ) after his last treatment since it isn't quite in properly. He agreed with me and said they would take it out before we go back to St. Jude. While there the doctor asked me if I get migraines, then asked if I had blurred vision.  So then of course those questions were scarring me - he then said I am not trying to alarm you but your left pupil is much larger than your right. He then measured them and said they really are borderline and I need to see an eye doctor when I get home. I told him I am going to waste 5 hours googling this and he said I am not trying to make you worry but just get checked.  Nice little addition to my stressed out life at the moment.

 

Day 22 of Proton ...complete! We had our last appointment at Nemours today and saw Dr. Sandler for the last time while we are here. I told him we are meeting with Dr. Aldana (Our Neurosurgeon here)  tomorrow about one of Nicholas' fidicuals in the back coming out after treatment because his body is clearly rejecting it. So we see him tomorrow and will find out when and how that will be able to be removed.

It was Ryan's last day today ... kinda sad and i hate goodbyes so I just gave Jen a quick hug and said see you at Jude in 2 weeks.

Day 21 of Proton ...complete! The further we get into being complete the more anxiety I have over these treatments. It's just terrifying and going back into the gantry every single time to hold him while they sedate him is really getting harder and harder for me to endure. I just want this over with.

We went to Kim's (Christian's Mom) for dinner, her mom cooked an amazing dinner and of course the lemon cake we all love so much! Thanks For the invite guys ...

Day 20 of Proton...complete!My boy has been such a trooper --- so many Mom's say that their cancer child is their hero, but I was reminded by Nicole that read me a piece another Mom posted and I wanted to share it with you all below. Labs are in - his ANC is 908 that's the lowest yet.  His platelets seem to be dropping weekly since we started radiation they are at 145. We had Jen, Tim, Ryan and Robbie over tonight - they brought carry-out and I can't believe they are leaving here in 2 days. At least we will see each other at St. Jude in 2 weeks for all our testing so we will be on the same schedule for chemo and MRIs for a while, which is nice to be able to see faces we know from this journey when we go back.

Our night ended a little early because Nicholas got sick, I was a little late in giving his Zofran to him and he clearly needs it scheduled still. We are down to single digit days left of treatment .... I am looking forward to packing up soon!

THIS WAS WRITTEN BY JULIANS MOM :::

These children are being called heroes by many. It makes me cringe a little. A hero usually has a choice in his actions. They choose to do the right thing to save a life, they choose to go to war, be firemen or soldiers.
Our babies were thrown in this war against their and our will. To me they are victims, not heroes. Most time they handle this crap with grace. They smile a lot , survive the bumps in the road , they seem brave doing it. Maybe true for some of the older kids, but the little ones??? They don't know any better. They are resilient because that's just how kids are. They don't think about tomorrow or the next admit until they are older. THEY ARE KIDS and they got cancer. It is unfair, unhuman and so so wrong.
Julian isn't a hero , he is a victim . His story has helped a lot of people , and might still help more. At least that's one good thing that came out of this horror we live.
Again these are MY words. I don't hold back on the way I feel.

Day 19 of Proton ...complete! Woke up 15 minutes early on Mondays to place LMX4 (lidocaine) and tagaderm on Nicholas' port for it to be accessed for the week. Normal Monday labs get drawn and back to sedation .... I really hate him having to go through this process.

After treatments we place Biafine cream on his skin in the radiation fields. It helps promote healing and calming the skin.  About an hour after we got home he was missing his second patch of hair above his scar line. It's nothing like chemo where it gradually sheds - when this happens it like someone wiped his head bald in spots. His hair is coming in is so blond you can barely tell he's missing patches. The hair follicles are burnt and damaged from the radiation and it takes up to 4-5 months to start growing again in those areas if it ever does in fact come back.

Sundays are long days down here. Nothing is open and too much time to think - I didn't mention that Nicholas' hair has now starting falling out in his highest radiated area near his scar and since we are only 18 treatments in we still have a lot more to go so I am stressed out over it. All day every day he's all I think about - I look at him and just cry .... I just wish God never allowed this to happen to him ... gladly I would take every bullet he's taking to relieve him no matter what the outcome would be.  We are so close to done yet the effects of treatment are filling my head daily .... I just pray so hard that God's hands protect him .... Lord please watch over him .....

A fabulously boring Saturday with nothing to do, I am not feeling great - extremely tired so we are staying in .. I wanted to share this with you all.

I belong to a special group of women My friends and I have an amazing bond. We never wanted to be in this group, Yet we are in, for life. Maybe we have met, maybe we haven’t, Yet our love for each other is boundless. We know the pain the other one feels, And we share our victories small or huge. Words like chemo, IV, Zofran , bald heads Are always parts of our conversations, As well as roidrage, tears, and meltdowns… We always know where the closest puke bucket is , We can hold it in one hand and if necessary, Swallow the sandwich the other hand was holding. We can drive to the hospital , Park in the dark parking garage Make our way thru the halls of the hospital And to the appropriate floor, Settle in a room, turn the TV on, Give instructions to the head nurse, Silence loud beeping IV pumps, Direct a wagon AND an IV pole To the playroom without hitting anything Make our way back to the correct room And all this, mind you, With our eyes closed at any given time. We know how to draw blood from lines Sticking out of little kids chests. We can hold them down with one hand , While a nasogastric tube is inserted in their little nose, And be on the phone with their dads at the same time. We can live for days on hospital food, And on maybe only one meal a day . We know the names of up to 20 different drugs , Their purpose, dosage and time to be taken. We are always on call, 24 hours a day , Seven days a week. We are used to not always looking our best, Hard to do with only a few hours of sleep . Make up , hair styling, skirts are words of the past . We have become addicted to texting , hospital, clinic, home, wherever… We talk sometimes at all hours of the night , We know we can count on someone to be up. Then for one of us , the world stops . She has to walk away, broken. This job is over . The job is over, but the fight is on. Remember , I said we were in this forever. We are friends, sisters, temporary nurses, We are each others rock, each others punching bag, We listen , we vent , we cry , we laugh together . We share our lives and our deaths We share our pain and our victories. We are strong, but not by choice , Sometimes we win , sometimes we lose, But never are we defeated . We are not nurses We are not doctors, We are cancer moms…

Posted my a cancer mother - Mimi ( oct 20th 2008) - Thank you for putting this indescribably world into words ... <3 Angelia

Day 18 of Proton...complete! I hope you took the time to watch the video I posted yesterday, I realized how much I don't tell about this process. I sobbed uncontrollably watching that video - it is unbelievably true.  I have a hard time every time I walk my son back into the gantry for radiation and watch him fall limp in my arms being sedated so that they can place him on the table and bolt him down with his mask.  When I think about what is being done I am disgusted and I can't think straight .... my baby ... yes my little baby is being radiated.  Nothing could be worse than living this process. I think I have not been real or emotionally open enough in my posts - this process is a nightmare and I try to focus on hoping and praying that he is cured at the end of this incredible nightmare.

I am not afforded to take for granted that my son is going to be fine even after all this .... imagine that ... I haven't been home except for a few days twice since May 21st, 2010.  I would do anything for my child ... anything ... God grant me the strength because honestly ... I am really weak ... I'm beat down and trying so hard to stay strong .... why my son ..... why this precious boy .... he's enduring so much Lord I pray you allow him a full life and a long life.

 

We had no treatment today because it's Veteran's Day.... but I am so thankful that Nicole came because she has made me realize there are such important messages I need people to see - to read .... this is one I ask you kindly to read and watch with an open heart.

I spent the day at Wolfson's Children Hospital with Brandi and her husband because Megan P., (on our friends we follow link) needed another MRI because of symptoms ... thanking God tonight because her MRI is stable.

 

Day 17 of Proton...complete! Nicole came back and watched him sedated in the gantry today. It's a bizarre process to watch. We hung out with Kim and her Mom in the lobby and spent a little time talking. She and I had lunch and then she left to go home. I spent the day with my boy and it's my Birthday today .... I can only thank God today that I am able to spend today with my precious Nicholas.

After lunch Brandi and her girls stopped by. Megan has an MRI tomorrow so we are going to sit with her during it.  In the photo to the left is a pic of Megan, Baby Nicholas and I. Before Nicole came I planned to have dinner at my place with Kim and her Mom so they could all catch up, but I didn't cancel and still had them come over for dinner.  Christian and Baby Nicholas played and we had a great time.


Dear Lord,

Thank you for today - everyday is a blessing ... but I want to thank you for allowing me to spend my day with my boy .... I miss my family but in a few weeks we will be back together again.

Day 16 of Proton...complete! Went home and napped and then Nicole, (Baby Wade's Momma) came to visit us. It's the first time I have seen her since her precious boy went to see Jesus. It's so good to see her, we didn't get to spend much time together before she got a call from home and her daughter was running a high fever. She felt like she needed to go home in the morning. She's going with me to the Proton Center in the morning and then going back to take care of Lauren. She's one of the only people I feel like I can tell anything to about this process and my fears and she understands me. I am blessed to have her.

Thank you Auntie Nicole for visiting us and thank you for the Toy Story Jammies and Movie .... we love you soooo much!

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