Updates

Ok short and quick update.... we were to leave this week to St Jude for scans on Jan 22, 2014 ...

However I emailed Nickys NO and asked if there was a way to do clearance the same day and told her our winter vortex left us down to one car, now none because even mine has an issue and that the ceiling leaking last week left us with crews in and out with plumbers and heating and cooling crews to follow. Thank you mother nature for this dish of FUN!

I also mentioned he finished HBOT on Dec 27, 2013 .... so her reply was let's wait a month?!? I was a liuttle shocked we were scanning every 2 months and its been 4 now. I asked if she was comfortable with the wait and she said its standard to wait 6 or more weeks after HBOT.  Where was that memo? lol they knew we were completing HBOT but no one raised this point. I then called a close friend that has been down this path and she too said, I would wait, why worry yourself when it takes a few months for HBOT to start showing changes. Well that was enough for me to say OK ... you mean I dont have to be stressed right now? YESSSSSSS.....

We tried to shedule in Feb but she is gone until March 3, 2014 so March 5, 2014 is our new MRI date .... please still pray .... I will keep you updated once the actual itineray is in my hands and its set. With that being said it's like a cruel joke that Nicky ALWAYS gets a bad ear infection right before we leave to St Jude.... well he's got one AGAIN and antibiotics it is - its like clock work to get one exactly a week before we should go.... HAAAAAA... not this time date changed ......

Lord,

Heal our Nickys ear and keep continue to let HBOT heal his body .... thanks for the mini stress break and keep your hands on our love!

Below you will find a post I have re-written 5-7 times from the last few months adding, changing and evolving this post - but I ask you to have patience and read it.

2014.1
Today Jan 6, 2014 we had a flood that has taken over our time and we took down our Christmas tree tonight, something I hate to do - it means another year is gone and while I am so humbly grateful for another year and all the miracles it brought - the cancer mom in me dreads knowing what the next 365 days will hold and will this time of year be our amazing family of 6 that we now have for 2015! While taking down the tree I reflected back to a moment that hurt me and still haunts me the most - the date of f Nicky's surgery and the one moment that honestly made me pass out. I recall only a few things clearly - I remember watching my 8 month old whisked away on a gurney and not knowing what would happen or if he would make it - I remember our youth pastor Steve Amaro sitting there the whole 6-7 hours reading verses to encourage us - I remember David Strange and his amazing wife coming to drop off snacks for us in the OR - I recall the most vivid memory being a young man in blue blood stained scrubs walking towards us and my heart pounding - I thought as he walked towards us and I realized he was wearing MY SONS blood - I thought my Lord, please don't let him be dead! What a horrible moment - and all he came to say is surgery is going well and it shouldn't take as long as expected - the vision of him and the stress - I passed out for the remaining time until I heard everyone silence in conversation and say they saw our surgeon - I jumped up scared but when she smiled I just buckled at the knees and gasped as I hugged her thanking her - I got it all is what she said.....


Fast forward :::::

So much is happening so quickly! Where to start  !

2014.7Well we finished dive 40 out of 40 of Hyperbaric Oxygen Therapy ( HBOT ) on December 27th - No regrets, they said after 20 is when the changes happen - I have to agree, he has a growing appetite and since his new ear molds ( for his hearing aids) came in its started with 20 -30 minutes at a time mainly with us working with him on flash cards, counting or alphabet etc with us or his nanny. It's been amazing when he walks over and hands us the hearing aids excited to put them in and we do intervals on his terms and extend it by saying a few more minutes, he will forget they are in and we might get a 15-20 extra minutes. Sounds missing are surfacing when I go through flash cards, colors, animals, shapes - it's been exciting to watch him learn, remember and be excited to put the hearing aids in.

Since shunt surgery he was anti water, showers baths and we would get him to swim though.... Well I am excited to say we can't get him out of his baths! He loves helping me give the twins baths and now he loves them once again. Isn't God AWESOME!

We also have been able to hide vitamin D drops since his labs showed a vitamin D mild deficiency- so Gatorade in a syringe mixed is what happens every morning now. We also switched it up and do a few 2-4 pediasure 10ml syringes to make sure we are getting some of his nutrients he needs - we have consults once again with Dr Wallace the worlds best nutritionalist in the country for children that have had radiation and chemo and though we are taking small steps to ensure his comfort level .... He's been eating so well lately. Dr Wallace and I spoke last September, some of you may remember that she had us try the boswellia and once it wasn't working we stopped. It's hard to hide things with a picky eater but we are getting it down to a science lol. We haven't tried to add any of her additions, we are waiting on this scan before we do anything.

Many of you know I read all the newest study journals to be on top of Nicky's care in fact I have had the privilege in my life to mentor so many families, I am grateful for each family!!!! I had the honor to meet one when I was in California with the babies. I am truly blessed. They say God prunes your life through lessons - we don't know Gods plans - I watched a woman on Saturday  Dec 7th at a lunch for Life Challenge preach and she said just that. Jeremiah - I have plans for you while she said "I know Lord", she heard Gods voice said it 3 times and kept saying "I know Lord" by the 3rd time she paused and heard The Lord say, " I never told you what it is" that was a profound statement.... We feel in control, so we think ....but the truth is HE is the only one that knows that plans and how the story begins and ends. I am personally grateful for all the people and children I have had the chance to love, I am grateful for the pruning God does. At first it hurts, but then the truth is revealed and HE has removed people that we're not good for our children our family and our home, especially Nicky.

 We had a small delay due to my own ear having a ruptured blood vessel in the HBOT tank and it was so painful. Again, I immediately thanked God for stopping me 3 treatments in to get Nicky tubes again because if he experienced this pain he would never have gone back and he LOVES his dives at HBOT and loves his nurse and we are just grateful for this experience and Gods Hands showing me what to do when I didn't know why. We had a great Christmas and watching Nicky truly enjoy it and understand it was the best gift!

2014.2

2014.5On a different note some of you know I took ASL American sign language in college - along with our school district we have chosen to do the class that speaks and signs and all 4 teachers including on one that's deaf was glad I was dedicated to both. This is a good choice for Nicky and Christian and I will be taking classes ( I need a serious brush up and our whole family will now learn signing) we start January 27th - this is good for us all. Nicky starts as soon as HBOT is over, so before we do but I will be attending classes with him. It's such a good fit.

Does Nicky need sign language ? NO ! He's in a speaking classroom BUT I believe it's beneficial to get him to learn both ways to communicate and I am happy to bring it into my whole home, he says things we are guessing at, like today he pointed to something and said yuk -- ewh - that's disgusting! Now the word disgusting is a new one and it wasn't clear enough unless you know him what he actually said.

So the looming scan date approaches and my anxiety kicks in, how can it not for over a year we haven't just heard scans great see you in 3 -4 months - there have been concerns and while in March the shunt fixed 2 issues, the fluid edema in his spine was gone last scan and his ventricles looked better - however the radial changes have slowly gotten worse is all we are told. It's never even a conversation about his cancer or original diagnoses - but instead and entirely different oddity of changes that match his radiation field. We are concerned, Nick and I deal with our stresses in very different ways and so it's almost as if a division in our own home creeps up on us while the date of the scan approaches. We learned that Nicky was over radiated by 12% per his planning, though our primary Radiologist Dr. Merchant will not even take responsibility for his planning and Jacksonville, I doubt they are aware of all the information I now know and it seems a waste to even speak with them since they wait until they hear Jude's opinion because they don't want conflicting opinions. Everyone from both institutions are aware of their mistakes and yet the only reply I heard from our Nuero Onc is that Merchant thinks we are pumping Nicky with all kinds of supplements. As I said before, he's picky we get vitamin D with Gatorade - I wish we had the ability to give him more but he can't take pills and it limits us to finding oral ways and I can't force him to do it yet. He's been through enough.

With this being said, all the side effects we have been told to look for over the last year, snoring, trouble breathing, choking, paralysis on one or both sides, fatigue or balance issues. The only thing we have seen concerning was balance after he had a virus and here and there it seems a little off, but our home is much larger than the one floor and the ceilings much higher echoing - so different than what he was previously use to. So am I over analyzing him, it's hard to say when your waiting for very scary possibilities. We believe that if it was anything at all serious after a year we would see much more concerning issues - but that doesn't mean we aren't concerned it could be a slow shunt issue and when it seem to improve we canceled the CT scan locally because it's not gotten worse it seems a bit better so this next scan clear has us on our toes praying Gods Healing mercy and grace is poured over our Nickybear every single day and that he remains disease free! We pray these changes are resolving after our attempt at HBOT.

2014.9

I was told not to expect anything drastic on the next scan, however how can any doctor say that when we are talking about changes no institution has yet witnessed. Maybe they don't know the power of prayer that I ask you guard my son with this very moment and please continue to. Maybe they don't know like I said above that God has a plan - and no we don't know it - so we must endure sitting in the dark and waiting on The Lord. He is our light, our HOPE and we will continue to pray for our miracle and that the words "God's Hands are on it" truly are on our little boy. Not just today but every single day. Keep in mind Jan 22, 2014 is our scan with many prayers we get the news our hearts desire.

2014.3

Lastly, we had panic mode as we decided to go up north for New Years. Nicky wasn't eating and it got worse and a slight fever I could only gauge by touch since we were in the mountains in a cabin away from the world. The following day I gave him Advil and he spunked back up and I thought as a precaution to give him one more dose before bed to avoid a night fever and ten minutes after he took it, he vomited it up. This was the first time since treatment he's thrown up and I was a total mess and just wanted to go home! We made it through one more day as he woke up with an appetite and energy that was increasing. We came home a day early and his appetite bounced back but I wish he would go through a chubby phase again those 3 days of not barely eating I know wiped that one pound off him we worked hard to get! We didn't see his doctor by the time we got back it was clear he had the flu or a virus.

I won't lie it didn't help the scan anxiety! But again we can only pray to our Lord he is going to be fine. From our family to yours we thank you for prayerfully lifting our boy up and please continue to! We hope your Christmas and New Years was wonderful and filled with the Lord's magic!

Dear Lord,

I lift our son up to you and all that 2014 has in store for our Nickybear..... let us have peace going to St Jude and let our efforts be healing to his body. We know you are in control and place our precious Bear in your Hands as I have always said, "God's Hands Are On it! I ask that you hear our hearts prayer that the fear will be replaced with good news... You are a merciful and all powerful Lord.... all the glory be to you .... touch all of our readers and bless them this up coming year ...In Jesus' name, AMEN!

2014.8

4

cake2First of all wow ... time flies - the twins were born September 11, 2013 and at 33 weeks premature. That left me in California, once again living in a hospital in the NICU without my family for 2 weeks - extremely hard on me but my hubby finally brought my boys to me for Nickys birthday... yep Nicky is 4 Sept 22 we spent go carting and acarade and firehouse chicago pizza and balloons and presents and madagascar cake and we finally got to sing which he LOVES! Thank you Jesus! Wasn't exactly how we wanted to share it but, we were all together that is all that matters! We had to rent an RV, my dad flew down to drive with nick. The drive was 39 hours to get home due to altitude the babies could not fly.... thats the fastest way to some it up lol! This bring us right into October that seemed to fly by ...

ddaSo very sorry for the delay in updating, it's been a busy time for us all! The twins are over 2 months old and Nicky has proven to be a great big brother! Who knew ? He likes to point out what he thinks they need and when one cries he's like awe baby and kisses their forehead! Heart melting moments truly. It's shown a mature side to him being around them and it's been amazing.

hbot

We started dives at the Oxford Hyperbaric Oxygen Therapy center. I know I mentioned we were looking into it but my mind was certainly made up after speaking openly to a radiologist about Nicky's situation. I was bluntly told that while Nicky exhibits no side effects from the radial changes / damage, that eventually if it doesn't stop that he will. All of our teams, meaning St Jude, Boston Mass and U of F all believe this is the least invasive way to attempt to stop the damage - in no way at all can these treatments harm him - in fact it could benefit him in many other ways. The treatments are not covered by insurance but that's a risk we are willing to take in order to prevent any further damage. The treatments are at 5pm so everyone's home for me to take him or Nick, we alternate. So I couldn't be happier that he walks right into the clinic we switch to scrubs and pick a DVD and we has been amazing the 11 dives we have done. Halloween came and gone the weather was horrible so we spent it at HBOT instead.

halloween2

It also worked out well because of Nicky's school schedule. His IEP evaluation was delayed due to his old nanny not willing to email the excels on him to me and made us wait 3 weeks to get a binder that is already completely a waste because he's doing more and more daily and she clearly didn't update it. AS to why she wouldn't email them, only God knows, but we are grateful she is no longer in our little mans life after doing this to him.  So I had to redo them all so his Eval could be done - two teachers that will come to our home again also to work with him. He will be part of the hard of hearing program. We already know he qualifies for hearing and speech which is exactly what we needed. They will pair him with another child to work on these tasks. I will be there with him most of the time, which is great because I will know exactly what to work on at home.

So could we do these dives 1hr 30 mins long for 40 treatments and it may not change the radial changes - that's a possibility but I believe in my heart I have to follow my gut and God given instincts and do this. It's our time, our energy, our love for our son to try all we can to make the best choices for him at all times.

earsI also forgot to mention that prior to starting HBOT we were told he needed his tubes put back in, and we did that after 3 dives and we are so glad we did he feels no pressure at all! So we are placing our hope in God that these treatments will only heal our little guy.

We got referred to Oakland County for Nicky's hearing through the school and he will have a new baseline done here and new lighter smaller molds will be made finally for his hearing aids. The school will be working with us and him to get him to want to use them - currently we had them turned down by 25% to ease him into liking them. They were so loud he would hide or cry and all the audiologists have told us not to force him or he will hate them. So now that we have a team from Bloomfield Schools working with him directly - we know eventually we will get there but on his terms because we do not want him to hate them or feel forced.

So we will be returning to St Jude for his scan that is Jan 22, 2014 - while I hate Wednesday scans at least it will be reviewed at the Brain Tumor Board meeting that day.  We are praying our hearts out that these changes heal and that our son remains cancer free. We ask you to please do the same and that Gods almighty hands are on our Nickybear!

Dear Lord,

Keep your hands on our Nicky and let these treatments help him daily. Please keep our precious boy cancer free and let him be healthy and well .... thank you Lord for our family !!!

game

 

Sorry for the delay, there were many calls with doctors and still no solid answers as to why these radial changes exist. Nicky remains a happy silly boy and for that we are grateful.

I know I told you I would not use this as a family blog, but while we were in the midst of possibly starting HBOT treatments 5 days a week 2 hrs a day for 8 weeks to help those changes...... God tossed us another surprise - On Monday Sept 9th at 10:30pm California time which is 1:30am Tuesday Sept 10th my phone was going off and Nick noticed it around 3:30am ..... the words "my water broke" from my dear friend who has been carrying our twins for us and the panic that I felt after not sleeping for weeks over Nickys scans - all I could think is this can not be happening shes only 33 1/2 weeks pregnant! Well it was happening and I packed the whole night and flew out that afternoon only to make it around 8pm out to Cali, then while trying to stall labor - apparently our daughter had her own escape agenda and we ended up in the OR for an emergency C-section and our Daughter was born on 9/11/2013 at 4:24am at 4lbs 2oz and her little brother, our 3rd Son came at 4:25am a minute apart and was 5lbs 2oz and they were tiny and well but needed time to grow .... I have been out here ever since and missing my family in the worst way .... finally Nick brought the boys and we finally were a family of 6! Gods timing keeping me away from mainly Nicky left me a wreck but hes been so sweet to the babies and kisses their heads and says I love you since I love them isn't something hes use to saying yet lol.  There is so much to tell .... but I just needed to tell you to pray we come home early - Nick and I are tired of hospital living and boy has our family done a lot of that!

I will update more on NIcky with the treatments and yes with photos when I can I just can't from a lobby computer! Thank you for your continued prayer, we really need it ! Also pray for complete healing for my friend she went through horrible labor and then knowing it would be a csection - I have to believe she did all she could to try to get me there in time - my heart is filled with a love for her that no words could ever give justice - she gave us the most precious gift through our Father Above! 

 

 

 

Once again our results are just confusing and give no true answers at all. While no one thinks that Nicky has relapsed, St Jude said that the radial change has gotten worse in the brainstem calling it edema / radial damage  -  in his ventricles and spine have cleared up completely, so the shunt did fix the CSF issues.  Our news really is no different than it was in June except its slightly changed more and they did a spectroscopy and the cellular activity was normal so it gave us no more information - it's frustrating not knowing what this change is they and they can not do a biopsy in this location -  again our team does not believe we are dealing with ependymoma, we just have to watch and wait and hope whatever it is resolves itself and heals itself  - scanning in 4 months because I'm sick of rushing every 2 months down there with a child who shows no symptoms and they have no plan at all the only thing that was brought up was HBOT - because they do believe its radial damage - so I'm my opinion it's just mixed concerning results with no solid answers....  I have had people ask me how are we doing .... are we are stressed? Yes,  but we are living life no differently and we will keep praying ever harder for these changes to resolve. I do miss those simple scan results....

In the mean time, Boston has us slotted for a full view By Dr. Yock and we are hopeful that she will be able to give us more information than just telling us to sit back and wait....

God has a plan though and we will focus on how great Nicky is doing  - because we is doing really well. This photo below was last night, TENT TIME with Christian they love making tents. We are now focusing on our bambino's that will be here soon and pray for a safe and healthy delivery....

tent

Please continue to pray for our Nicky .... I also want to ask you to pray for Arianna and her family, she scanned the same day as us and the results were devastating with a new tumor at the base of her spine, this little girl has been such a strong fighter - Lord Watch over her!

I wrote my update about us leaving Monday below this one-- its 10:36pm Sunday .... it has been a really long day .... sometimes its just tiring .... I think I hit the wall when my oldest wanted to make something in the oven and almost burnt his hands and I waited with him with tears in my eyes and finally hung my head and apologized for all the times I am weak - is it fair for a 12 year old to console his Momma?

I was sad today and haven't slept well in I can't remember thinking about Nicky being poked and keeping it in and managing the daily routine they expect of him and thinking I AM SOOOOOOO "Bllllleeeeeep"ing sick of this @$#%!  Can I be human ever ! Then My dad called to pray with me and I could hear his tone how sad he was for me - wishing he could take this from me and he can't ..... while I could barely breath through my tears and I just kept saying I am so sick of him going through this and being so afraid.... I hate cancer ..... I know my Dad knows  how painful it is to hear me crying and not be able to fix it for me .... its the same way I feel with my Nicky ....and my summer has been consumed by it, yet we truck along make plans, smile and try our best to ignore the beast that is considered a possible passenger we never want to ever endure again.

I was sick to my stomach reading an update of another mother today that lost her teenager 6 months ago ..... the local paper, nor the school, or his frieneds even recognized his absence from the gold league - something this young man LOVED  and what a horrible feeling for her to endure, and Aaron Bell is her only child ..... I found myself so emotional over it ... sad .... I told another friend I mentioned I had to go to St Jude and they said again? aren't you done ...? WOW .... I sure wish there was a DONE and HES GREAT ..... I want people to stop being ignorant .... at least the people I know, just because hes not on chemo or bald doesn't mean we drop our guard,.. what a hard weekend ... did NIck and I miss things we would want to do YES!!!!! But getting past this boulder once again is all we can see ... so HELP US ... PRAY that MOUNTIAN MOVES .... please ..... Faith is tough ---- the hardest lesson is blind faith and we repeated get the same test ..... help us ---- pray for us to let God sustain us .....I told my Pastor sometimes its a stranger and sometimes its our church but we need it to carry us all so please ... keep praying .... we need this so very much with the babies coming .... GOD BLESS AND READ BELOW ....

 

Hi all, thank you for following our Nicky ...... I would be a complete liar if my scananxiety wasn't at an all time HIGH! Nonetheless, Nicky remains symptom free for anything at all - so while I pray and try my best to trust God at all times I can look at him and it calms me. Well not always he has his normal I'm 3 and and I want everything NOW. Regardless of those meltdowns, he is talking so much more and its a great thing - just not always since he wants to tell us where we need to go which is I WANT TARGET etc... I am sure you can see my point.

I ask you to pray deeply that his MRI on Tuesday morning shows that whatever these odd radial changes have been that they are in fact completely gone! That he remains CANCER FREE and always will please. This scan so close to the twins coming is made this not doubt just a harder trip. I may have mentioned that typically our doctor finds us Tuesday or calls after with the results. Due to their concerns on the June 1 scan, we are going to ask that she not contact us until the entire team meets on Wednesday and he is completely reviewed by the Brain Tumor Board at St Jude which happens on Wednesday they meet Memphis time around 3pm-5:30-6pm their time so we should be getting a call after that meeting and yes when that number comes up of course its like a roller coaster whipping you mentally answering it. I am hoping that I can also over night the scan to Boston Tuesday so they can review him at 11:30am is when their board meets ... so Boston may get the scan in time or maybe not and we could hear from them before St Jude. We don't really know I am just praying to get them out before we fly back Tuesday night. So we wont even be in Memphis for the results. Its mentally so hard to have your doctor call and through guesses at you and once she does you never fully can erase the mental damage she's done the last few times.

So while Nickys had a good summer, there isn't a day that goes by that this pending date has messed with my head. Pray for us all to remain calm and let God fill us with peace because Nicky is in Gods Hands and always will be.

aug2013

To My Lord,  Jesus touch our child with your healing hands daily and never allow any harm to come to Nicky again. Show your mercy to him and us as we wait and believe that You have healed him. Lord please bring us CURES .... In Jesus' perfect name AMEN

Hi all sorry I haven't updated lately! This summer seems to have flew by and well I have watched Nicky like a hawk! We leave for St Jude on August 26 and he scans Tuesday August 27 at 10:30am Memphis time. The amount of scaniexty for this scan is simply nothing to compare to any other time. I feel very on the edge at all times. Then I watch Nicky and it calms me. He's in love with CARS from Disney Pixar and like his older brother has gotten into wanting to shop online when he see the new toys! Not a good habit at all - lol but that's our Nickybear.

bay15In my last post, I told you that Nickys primary doctor had called the week before we were planning to scan July 1,2013. She called after a second review and said that they did not find this to be that urgent and gave us the option to wait till August.... moving forward we gladly took that option. I am not sure if scanning 3 weeks apart from our U of M scan would have given us any real answers. So everyone agreed to wait especially since he has no symptoms of concern. As I watched the calendar approach the month of August a tiring stress has filled me, I am praying more and more as this scan approaches that all is going to be well!

So how is he, he's growing, his appetite is the only thing that seems to be a hit or miss and he is one picky eater - though pizza is always his staple diet lol. He has grown about 2 plus inches since our last trip to Jude but I am sure his weight hasn't changed and I think that just comes down to being so picky. His personality -still shy with others but will now at least say goodbye to some. Around us, hes silly loves to laugh and is a funny kid! He tries to repeat everything we say and we are praying once his hearing aids are turned down and new molds are made he will use them. He is expressing himself more and he shocks us all the time when he says something new. He has great balance and his memory is spot on! He loves to play and cuddle. He loves his big brother! He still has tantrums like any 3 year old would, the only difference is he can't always express himself and these can be stressful and tiring.

We took a trip after the storm knocked out of power and headed to Bay Harbor for the 4th of July. We love it there and try to get there once a year with the boys. We got Nicky swimming again and that was a huge deal for us! We have a pool but it is not completely ready, it was suppose to be done 2 months ago. Gotta love contractors! bay14

It's been a different summer due to the weather and waiting for this MRI as it approaches. Nick and I remind ourselves that this is in Gods Hands and this is all we can do is give it up to God and pray that they see even more improvement in his spine and ventricles and that the radial area of concern is no longer there and that he remains cancer free. We ask you to please pray for us a little harder this because mentally we need this scan to be great with our twins arriving soon. So much has happened so quickly, a new home and non-stop people working around the house and having a nursery ready times two! Nicky will also start early intervention program at the school that I will be attending with him, socially this will be a hard thing and a good thing.

We lost a lot of children over this summer, its been heartbreaking - Tanner S., Chris W., Aaron B., Hilary M, Asher L., Reese C. - I no doubt am missing a few - please pray for these families as you read this - please pray for an absolute cure for this disease.  Please pray for our Nickybear that those radial changes are GONE and that he remains cancer free!!!

My Lord, My Father,

I lift these families up to you and may you comfort them all. Please keep our Nicky Healthy!!!! Let us hear NED once again please Jesus, it is ONLY through your name we maybe petition our prayers at your feet - in your Almightly name AMEN!

bay16

So 2 weeks of calls and waiting and more calls and emails. Been processing it all and Judes urgency to get us there so quickly had me really emotional.

I have re-wrote this post 3 times and wasn't ready to hit send to you all. I'm glad I followed my heart and waited to update. So....

I also spoke with our radiologist from Jacksonville that wasn't overly concerned and really thought waiting to scan would help give us a better idea here. Its not that he's siding with either of our teams really, just a complicated case and its the first that has these oddities. He said it could just be damage - no one can say for sure what this change is yet. 

Then oddly around 6:30pm last night Nicky's primary from Jude called - what a different tone this call was. I think seeing all the other teams not feeling any urgency and gave them another week to all discuss his case.  She said, we all really are 99% sure this is not a tumor, but we have to know there's always a 1% chance they could be wrong. She said we don't need to compare scans so soon, it doesn't make sense to when he's doing great. Then our second primary, he was initially Nicky's first doctor called me from Jude and said waiting till August is reasonable. We are in agreement that this is a radial change. -----whhhheewwwwww! 

If I had posted the last two updates in between calls, what a different picture this all was - we were scheduled to be at Jude June 30 and scanning July 1.  It's amazing how much my doctors also trust me, 3 of them said what does your gut tell you - honestly my gut says he is fine. So now we just pray for this change to go away! If not improve! What a roller coaster the last 2 weeks of calls have been! 

What we know is Nicky's not relapsed - he does not have cancer - that the swelling in the spine and brain have improved. So NED with a radial change they are watching - we will Take that! 

So the Mommy side of this, I am hoping and praying my heart out everyday that the radial changes are going away, have improved and nothing is going to be needed. In my eyes my son is doing so well and is a picture of health. Its hard to understand when you have a child with no symptoms for anything why this change is even there.  Boston reviewed everything again on Thursday and again said they do not believe this is anything to worry about, but as his Momma - I am doing my best to give it to God and not worry! We just need good reports so we can come home and breath and enjoy our family.

mybear13

So we got word from Boston first, they said that nothing seems to have changed from the T2 view and that from the shunt being placed the areas are all decompressed so nothing seems to have changed - the edema in the ventricles and spine have very much improved. They suggested a scan in 2-3 months with a spectroscopy in the brainstem region, but overall everything looked better GOOD NEWS THEY SAID -  No Cancer!

Then the second call from Jude came in and I was able to get Bostons email to them while in the meeting. They still lean towards caution and want us to scan in the next 2-4 weeks. They too want to do a spectroscopy, and what that is is a test that is to see cellular activity from radiation etc. Possibly a CTPET as well. So two days of sedation. The reason for it is if it is radiation nercrosis they want to start him on a short bout of steriods to stop the damage. They dont feel comfortable without doing their own imaging to just give him steriods. If the tests came back with any hot spots, then they would know where to biopsy him, but that is worse case scenario and we are praying against that!  So an hour ago I was ready to plan summer for 2-3 months and an hour later I am now looking for dates to go to St Jude. Still No Cancer ... this is just the crappy stuff he are dealing with from treatment he needed. We will never locally scan after this, these tests are too sensitive to not just get to Memphis and have it done right so they can compare. 

So - pray that this trip is uneventful and that this MRI and tests come back fine and that we can come home and catch a break from MRIs for a bit. Lord you have this .... I will focus on you! Pray for Nicky and pray that those changes just disappear like the edema everywhere else has been! 

 

 

Sorry for the delay, but we have been waiting like everyone else that has been praying and supporting us.

While Nickys scan does not show recurance of ependymoma, we aren't sure how to feel right now.  We were told that from one angle that the radial changes looked improved and the T2 angle they actually looked a bit worse. The shunt is working properly and the ventricles have improved greatly, the spine edema shows slight improvement which was to expected with the shunt and can over time clear up. As for the main issue, these radial changes are concerning to our Jude Team - we discussed HBOT  ( hyper baric oxygen therapy ) treatments to reverse these changes - the problem with HBOT if these changes are any type of secondary issue - it could make things worse fast. If not it would automatically help the brains swelling.

So, the really confusing part is we have a non-symptomatic child for all the possible issues. While typing this my second team from Boston called to reassure me that they do not believe this cancer, but radial changes and that their board will be reviewing it on Wednesday as well. He didn't seem fond of the idea of a biopsy and said that they see these changes happen even this far out. Its amazing speaking to the worlds best and they differ in opinion. Nonetheless - I sure liked his answer best. He said sometimes these changes take time to heal and sometimes a steriod is beneficial and sometimes avastin ( that is an oral chemo - typically combined with HBOT) He said with him not having symptoms he wouldn't recommend anything at this point. Just to watch him closely.

So while the best doctors once again are watching our Nickybear closely - please pray for us all right now - the intial report from U of M was terrifying, but then we all need to remember that they have never seen Nickys brain and can't properly evaluate him likewise. So we are going to remain hopefully that this will still somehow, some way resolve itself without any surgical intervention.

I will update you once all our doctors have met with their teams and we have a solid path of action that shoulf be late Wednesday evening. I am not sure why this scan made me jump into panic mode and I sent out 5 Teams our MRI on Friday, but then again - I had a feeling they all needed to be following him on this scan and it allows them to communicate and agree on their choices moving forward.

To our family and friends,  I know you are texting and calling and showing us love and support - please keep the prayers coming and please have patience with us returning your messages and calls and texts until we post again... know that we love you and your messages mean so much to us when this type of stress is just part of this journey. Thank you for always being there for us...

Lord,

Be with all our doctors across the country as they meet and go over our sons scans - let them come to a consensus for our little guy - let these radial changes heal and heal now! We have faith in you - please Lord watch over our son!

Hi all .... So update Nicky has his local MRI this Friday at U of M at 8am - thank you Kim Karp for going with me to sit there! So as you can imagine stress has set in and the idea of waiting for the DVDs to be overnighted to St Jude and arrive Monday waiting for a phone call from them is making for a very long weekend where time can let your mind race - I hate this stress! We have no clue when we will have results.  Then this past Monday night Nicky woke up screaming pointing to his ear, sure enough right ear infection. Once the infection is gone he will need another procedure to close the hole in his ear. They will graft a tiny piece of skin from behind his ear and place it inside his ear hoping it takes and heals. Especially since we have a pool being put in right now - it's either chronic ear infections or surgery. We will be getting this done as soon as we can.

I just shake my head at procedure after procedure that he's had to go through - I just hate it all! And I'm not fond of the comment he's tough or he's a strong little guy - he is that's true, but he shouldn't have be the this tough - no child should.

On another note we are settled in to the new home and the twins anatomy ultrasound was last week - it's crazy what cancer has done to me mentally - I was a mess until I heard they are perfectly fine and growing ahead and on track. Like I said this isn't a family blog but I will drop a line here and there since so many of you asked me to.

Aside from that Nicky's doing really well - we are switching to a new ENT for hearing aids here - the ones from Jude are so loud he won't wear them. So we are trying to move things locally and not rely so much on them because they are just too far to help with adjustments and trying new things to get him to want to wear them. He's at a point that he will repeat everything you say, which is great but the hearing aids will help with certain sounds he isn't hearing load enough.

So I ask you all to please pray for our NickyBear that he is cancer free and that this shunt is stopping the edema / swelling / fluid build up has at the very least stabilized and not gotten worse - of course we know that it could take months for it to reverse completely but we are praying its already reducing and not getting worse - worse could mean an extensive surgery that we are praying he will not need. Pray for us this weekend while we wait, I of course will do all I humanly can to get our u of m records online accessible tomorrow so we aren't waiting but that is serious wishful thinking - this determined momma will try it all.

chillin

Please take a moment to pray for Tanner S. and his family, I just learned last night his disease has progressed and he will be placed on hospice. The Butterfly Program ( hospice) I can't tell you how heartbroken I am to even know there's such a program or why it even needs to exist - Tanner has been fighting cancer since age 2 and I believe he's 17 just wanting to be a normal teenager and DJ.

I do have one event that if you are a golfer I really hope you will attend it - if not just come to the dinner all the proceeds go to CERN which is the only network dedicated to finding a cure for what our boy was diagnosed with - they want to cure ependymoma! If you would like to be a sponsor please let me know!

cernn

Dear Lord,

We lay at your feet our stress, worries and fears .... take care of our Nicky because you always have Lord .... please let this scan be disease free and the inflammation ceased and wo would gladly welcome it to be GONE in Jesus' Name ... we ask you to touch the Seebaum family and so many others  ... Please continue to heal our NickyBear...

Well I just can't seem to kick this smile off my face and well I expect it to stay there! 

I can't complain - life is great - Nicky's been doing so good in so many ways - we wish he would use his hearing aids but he is still doing amazing despite just not wanting to use them. We see his local ENT Thursday to see if his right ear has closed permanently and we pray it has - we will attempt to get those hearing aids in, in a clinical setting there. 
 
While this website is not by any means a family blog nor will it be one because this site is about our NickyBears journey and it will remain so. With that being said, we would like to share with you that our Nicky will be a big brother by the grace and mercy of our Heavenly Father! There's more .... He will be a big brother times 2! That's right - twins will join our crazy crew! Not just twins but a sister and a brother! Now tell me God isn't amazing and His timing is the only way things happen and Nothing is created in existence without His plan! 
 
So while I apologize for being so quiet and slow to update - we've had a team brewing and needed to feel at peace and safe to announce these miracles into our world - we pray for health with all our hearts, we pray for healing to continue for our Nicky and we pray for our oldest Christian whom got so excited that we were finding out from parents at school congratulating us that we needed to tell everyone ASAP. 
 
So we feel humbled, grateful, blessed and so much more because we went through two years of praying, struggling and many heartbreaks to get such precious news, we also want to take a moment to explain that we have two biological blessings coming our way, many of you whom have known me for a while know that I was severely sick my 2 entire pregnancies with  Hyperemesis Gravidarum, so the option of possibly losing a year not being able to be Nicky's Mommy that cares for him, nor could we as a couple predict what our future held when we wanted to add to our family two years ago, so with that being said, we did not make choices quickly and really prayed on what our options were. Well, it didn't happen over night and a dear friend of mine is carrying our babies for us in California. I know this may leave you with questions on how or why we chose this path. It wasn't our first option - but we believed this was the right choice for us considering all we have been through.  One question I believe is important that we address, is through this 2 years of hopes and dreams through IVF and surrogacy is if we have any embryos left and the answer is NO.  This was our last chance and apparently a last chance was all we needed for God to give us these blessings. We will welcome our new little ones in October. I wish we had a solid due date but with twins anything goes! But in my heart I have this feeling it will be near the the middle of the month. It was a crazy few months because in the midst of this all happening another cancer momma found herself pregnant and called me immediately because she wanted us to adopt that baby because she knew how badly I wanted to add a sibling close to Nicky in age. Well she wasn't carrying one, it was twins too and fraternal as well! I thought wow Lord you sure have an odd sense of humor! Well I immediately thought of families that may want such a blessing and sadly that friend of mine lost the babies. I just want to thank her for considering us to be parents. So now some of you are connecting the dots with Nick and I traveling to Cali the last two years. I was just there May 8th and saw our new miracles ultrasound May 9th. It was the best Mother's Day present ever! Not to mention our Anniversary was May 13 and we have so much to celebrate. I apologize if this seems vague when we went through so much, but we want to focus on the blessings not the many losses we endured anymore. As for our surrogate, she's as sick as I was, if not worst. She has a PICC line in and is on bedrest, she needs our prayers. While she has taken on a huge role for us none of us could have predicted she would be just as sick as I was.
 
As for Nicky getting a local MRI with an early time hasn't been fun so  at U of M Childrens Motts. It's a Friday so we aren't expecting any news  or at the latest the following Wednesday. The wait is what it is or we have the option of going to Jude and to be honest - going back so often if we can avoid it for a few months possibly then we will wait locally. Please pray the edema / swelling is gone that the shunt is doing its job! Pray that the radial changes are gone because they must be ! We claim it, please claim it with us.
 
For many of you, you don't realize the true blissfulness these new bambinos bring to a very stressful world - we want to enjoy it all be grateful, thankful and praise our Father for the gifts Only He can bring.  
 
In the meantime we want to enjoy our boys and never take a minute for granted - so much can change so quickly. So while I always ask for prayers for the children and cures and our Nicky - after our two year struggle we privately held - I now ask you to pray for health for our babies and pray for every aching couple that so desperately wants to be parents - let God pour blessings on them and bring many many babies in the future to our loved ones and dear friends that are deserving of being amazing parents. Our cousin posted this a few days ago - "Try one more time. The next time could be your YES. Don't let the no's discourage you. Don't let the closed doors convince you to give up." Joel Osteen 
 
Dear Lord, 
 
Nothing but a heart of gratitude! Many times we wondered if we would ever be able to see our dream happen - but only through you and patience and never giving up that we have faith that Your Hands are always on every situation we bring to you and lay at your feet. You have shown us mercy and blessed us. Please help us keep our eyes on you always!

So I have not wrote since the whole surgery - well lets go backwards - the surgery for the shunt happened on March 13, 2013 at somewhere around 11am or later - an emergency case, its by age took our 7am spot - people asked aren't you angry and I said it stinks but how could I be mad - my son was 8 months old when he needed his first surgery - so no, I can't be upset of the priority of it. I got the BEST Mommma TT in Memphis that gave our Nicky VIP at LB the best she could - best advocate and nurse on the planet - no doubt what a tough calling, but she is a wonderful woman and I am so grateful for her extra love and care for Nicky!

So lets talk about after surgery we had a hiccup - his twilght drugs messed with him he was horrible, in a horror waking up and ripping the IV out like I warned them he would be..... yes, Momma knows her bear ... so we went through the 35-45 minutes of dilirum and he passed out in dads arms.This photo was right after surgery. Dr. Boop told us that he had more fluid build up than expected and he believed this is the fix our Nicky needed.

He was a trooper and was fine upon waking and well we had a few more bumps - but he released the next morning. It was a tough reality sleeping in a hospital bed with him smashed between us in a fold out chair but its done and we made it home and he is HEALING ,.....even hiccups with that but all seems fine - I just took out the rest of his stitches last  night which reminded me to post ! The distint smell of the glue and stitch dissolving REMOVE is what is is called is a smell I haven't missed with line changes or removing his dressings for lines. Went two years without noticing the smell. This time it bothered me - Easter is a sobbering reminder of "NORMAL" it was the last memory of normal I have for many of my dear friends I met through this journey. The photo below was taken the following morning upon being released from Le Bonheur Children's Hospital.

So Yes pray he heals - pray hes cured .... pray for our parents that lost children ( see my priorities are right too! ) then the ones holding on...... the ones that have to make horrible choices .... I just want cures, they can't happen fast enough I want this shunt to fix the radial changes and syrinx and allow him to heal because hes doing so well!

I need to ask you to pray for Baby El K.'s family - he turned 1 in Jan and he passed away recently  .... makes my hear hurt  and break all at once, I am also so sad it has been a year since Bree H. was here April 1 marked that date - pray for her family - prayers for Hallie C. whom I believe is in Memphis and possibly had surgery recently and is also starting radiation - either way .... there are so many to pray for let these babies fall off your lips while you read this and let God touch them. And prayers for a new child Ellie as she starts treatment ....watching so many children, is a test everyay and I wonder what my grade is with God - sometimes I fail and sometimes I can ace it but its tough so please during this Easter and Spring time ... hold my boy and these sweet babies up. Below photo was taken on Easter Day.

I also want to say I am so sorry that I haven't updated but I got a new computer and havent figured it out just yet. We moved and well its been 4 full blown weeks of moving and packing etc. I wrote most of that update 2 weeks ago but I am just updating it now.  Nicky will scan locally at U of M in the middle of May here to make sure this shunt is doing all we pray it is suppose to. Please pray it does!

This photo was during the move - its tiring lol ... Lord Jesus watch over our boy and our family keep healing Nicky daily and bring cures Father ....

Ok, so Nicky is NED - no evidence of disease. However, the areas of concern and inflammation have gotten worse and everyone agrees that a shunt needs to be placed. While Nicky is doing amazing, and that's a great thing that he has no symptoms - if we keep waiting to do something the onset of symptoms could be quick and scary. So we will meet with his Neurosurgeon tomorrow to consult but that is the plan. While we aren't excited about the shunt or any procedure, it will be done quickly. He is scheduled at 7:00am Wednesday, March 13 for this surgery. It is a quick procedure and thankfully a quick recovery only keeping us in the hospital for Wednesday night and able to leave Thursday, however not recommended that we rush home so we will come back Friday morning. I am sure some of you are just as unhappy with this news as we were two months ago, but the picture is clearer he does need this and well we are ok with whatever helps our little guy. He got his hearing aids today, he tolerated them well and was funny talking and hearing himself. Aside from these bumps in our own journey - it's ok because our son is cancer free and remains so. So we take each day as it comes and we are privileged that God gave us our Nicky and we pray this procedure will aid his healing process. It was by no mistake God chose us for you! So, again I will say - thank you Lord for each day - it is a gift. Please watch over our Nicky this week as he gets this procedure done. Please pray this goes smoothly for us all.

Friday night we are did major laundry and for those of you who don't know we are in the middle of a move as well so our house is half packed up and unorganized mess for us. Yesterday reality set in as my phone lit up with 901 area codes from Memphis. It started with pre-op doing their job asking the list of questions. I won't lie, I told the nurse, surgery is pending on Mondays scan! I wasn't rude I just said, I know this call is protocol but my son is doing too amazing for me to not argue that we should be just going home! I really hope I don't meet you - but I really believe unless proven otherwise that I won't see you- I was laughing when I said this trying to make a heavy situation lighter. She said you have a great attitude. I can't take credit for it - Gods fueling me up!Then St Jude's automated appointment reminder called, then another one from the neurosurgeons office - it was slowly chipping away at my mood.

boobear

I'm am 100% sure that spending more time pouring my heart out to God, reading multiple devotionals listening the CD Momma B sent me that keeps me in prayer the whole time I drive has been like a power source of strength for me! I am growing personally stronger in my walk with The Lord - it has been a blessing! I focus on healing verses in the bible and I just praise Him! Nick is praying so hard too, he like me we both find peace leaving our hearts burdens with the Lord.

boobear2Saying all that, we still must pack for a week regardless of what my heart says to me- that hasn't been fun - it's the reality that we must enter - in March 2011 I posted this quote that has echoed everything we face, a local Mom told me ... "prepare your heart", but NEVER stop fighting and NEVER stop believing ... make NO plans on losing. This is my friend, Julian's Momma, Nettie. Her words are true, yes we must pack for a week, we must enter this knowing a surgery is very possible - but we can also enter this BELIEVING that our crazy, energy filled boy is going to show them what God can do and they better show me proof that he needs surgery! I remember our surgeon saying we don't treat the scan, we treat the patient - well let me tell you this patient of mine is doing great! Please pray we stay strong, pray that the doctors see no cancer, no radial changes and nothing that should not be there and send us home so we can move. We pray remembering this is Gods plan, we also know we have the right to pray and lay our petitions at our Fathers feet. So if it is His will that we stay or our boy needs anything done that God is always with us, always making our path straight when we can't see that path. I wrote in my last post about a devotional app called, Jesus Calling by Sarah Young - I don't read forward but I did noticed that Monday, March 11, 2013 the title is "Walk by Faith, not by Sight" - that quote has been on our site and with us since the PICU - it's also on a ring my Dana sent me I wear all the time. Perfect timing for that entry!

Dear Lord, We are so grateful for all your wondrous miracles, from the tiniest ones - to the biggest ones in our lives we give glory, honor and PRAISE to YOU. We will praise you in this storm, we will seek your face in all that is ahead of us focusing on the blessings of today and leaving our worries and fear with you knowing YOU hear our prayers. Be with us as you always have been, let no harm come to Nicky ever again! On Monday - Lord when the anxiety kicks in to high gear, please remind us to BE STILL AND KNOW YOU ARE GOD!

Through Jesus Christ!!!!Amen - we will update when we can please pray for our NickyBear!

Today is March 1st, that means we are 9 days away from boarding a flight next Sunday to St Jude - that means we are 10 days away from Nicky's MRI ---- and hours of waiting and praying for results.

outside2

It's been a frustrating 2 months in the fact that Nicky is doing great! Why would I say frustrating, it doesn't seem like we have a reason to fly back to St Jude. He's doing so well his speech has improved - he gets fitted for hearing aids - sound levels right after the MRI. He was psychically fitted a month ago by a local audiologist so now we get to pick them up. The last few days everywhere I return the message is loud and clear that I am to give all my anxiety and worries to The Lord. My new iPhone app is a devotional called, Jesus Calling by Sarah Young (thank you to my sister Lindsay for telling me about it) ( not the free lite version) today it said the following:::

March 1 When something in your life or thoughts makes you anxious, come to Me and talk about it. Bring Me your prayer and petition with thanksgiving, saying: “Thank You, Jesus, for this opportunity to trust You more.” Though the lessons of trust that I send to you come wrapped in difficulties, the benefits far outweigh the cost. Well-developed trust will bring you many blessings, not the least of which is My Peace. I have promised to keep you in perfect Peace to the extent that you trust in Me. The world has it backwards, teaching that peace is the result of having enough money, possessions, insurance, and security systems. My Peace, however, is such an all-encompassing gift that it is independent of all circumstances. Though you lose everything else, if you gain My Peace you are rich indeed. Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God. —Philippians 4:6 You will keep in perfect peace him whose mind is steadfast, because he trusts in you. —Isaiah 26:3

It's a struggle to do this every day - but I am trying my best to understand and see that. I pray over Nicky daily thanking God for everyday - to remove the radial changes and to remove inflammation, to never allow cancer or any other growth to ever harm him. Praying everyday that he will need no surgically intervention. It's tough when we are told that more than likely he will need something - this is where we need to stand on faith and KNOW that God is in complete control. We ask you as this scan draws near to pray for our Nicky, that no matter what God has planned that He guides the Doctors and neurosurgeons to make the right choices for our little guy. Praying that giving this situation more time will give us better answers and ultimately healing is happening every second and every minute of everyday! Pray for our family to remain strong through it all - in my heart I just want to hear NED and get on a plane and come home - ALL THINGS ARE POSSIBLE THROUGH OUR LORD!!!!

We also lost too many kids this past few months, prayers for Bradley Allen's Family, Christian Page's family, Chris Bell's family, Ehrren Gillespie's family, Aaron Bell's family .... Please pray for peace and Gods grace for these families.

outside

WAITING ON THE LORD ......

nicky13So, last update I think I said I would let you know how things go after surgery.

Well as you know the first surgical delay for the syrinx surgery was shelved because I was a mess and Nick felt like we needed to get home and process everything. Jan 15th would have been the date of that surgery at 7:30am - around 6pm that day our Doctor called to tell me that they believed what they were seeing were radial changes.  (Sigh and breathing again) our Neurosurgeon Dr. Boop was in that board meeting and the three neurosurgeons at the meeting said they didn't want to do the syrinx surgery, but instead place a shunt to relieve inflammation.

During the end of that week I sent scans to Boston wanting more opinions and more eyes on Nicky's scans --- well shunt surgery was scheduled for Jan 25 and the Nicky got the flu making surgery impossible that week.

It was again rescheduled for the following Friday Feb 1, 2013. So during all this down time I spoke to doctors over and over again about my son. I searched for comparable stories and researched everything from 3mm shunts to ventricle placement.

All weekend and many many on my knees prayers, I wrote my neurosurgeon and asked questions trying to find peace with this procedure. He called me last night and we spoke for about 45 minutes about all the possibilities and mainly my greatest concern being that we place a shunt which could not fix this situation at all and we would eventually need the syrinx surgery.

My thought process was this, if the inflammation in the spine has been slowly becoming an issue since May and his ventricles slightly enlarged around July - Sept, it seems as though these changes are following the lead of what is restricting flow in his spine.

In his brain he doesn't have enough hydrochelus( edema/ swelling) to warrant placing a shunt (YET). So why would this fix the spine?

I even discussed which ventricle a shunt would be placed in and why. Again it came down to believing that placing plumbing in (a shunt) may resolve these issues and may not do anything at all.

I told my doctor, it's hard for me as his parent to watch him filled with energy exhibiting no behaviors of concern, yet I am flying down there tomorrow for a surgery my heart tells me isn't going to be what he needs right now.

Of course if my Neurosurgeon felt like this was the true fix - he would say so but this situation is not textbook at all. So while we have a plan, he said there is no wrong answer and we can wait until the next scan and then maybe the picture will be clearer as to what is needed. Maybe it will give the radial changes time to calm down.

He told me to think about it over night and call him today. Oddly, being the decision maker this time I just didn't feel comfortable making the choice to cancel surgery and wait or to board a plane tomorrow and just "try" this shunt procedure.

So this is when I have to lean on that instinct that God gives mothers and say ... Lets wait and see what God will do.

So we are keeping our March 11, 2012 7:45am scan. We scheduled an appointment on March 12 at the Neurosurgeons office to really figure out what Nicky will benefit from the most. We are slotted for surgery March 13 for whatever God deems needed.

Right now I am at peace because we aren't rushing to do a surgery we are certain he needs. It's very possible he will need syrinx surgery because after all every issue he now has on scans seems to be following suit from that issue. And he may need the shunt, but at least we aren't jumping into anything without feeling its the right thing for Nicky.
 
Whatever is needed, God placed on my heart that I needed to talk to our doctor and we are blessed and thankful he is a great doctor that listens well and was willing to consider all my theories and ideas and believed that to give it a little more time might just give us more clarity. It on the flip side may not - but it is our prayer that God didn't create these obstacles to pause us for a moment and put things off for now ....


I got a call from Dr. Nicholas Forman from Childrens of Colorado, he use to work at St Jude and had his entire team evaluate Nicky also. His first words to me were - THIS IS NOT CANCER, THIS IS NOT A SECONDARY CANCER OR GROWTH..... now 4 teams agree on that - he did say he has seen this in proton patients so ... he will be writing our team as well. I have truly been blessed to have the best doctors look at our sons case and lots of calls and foot work for me -but would you expect me to do anything but that for my son?


All week I keep thinking about a phrase my Dad told me when Nicky was in treatment. He said, "watch what God can do...." I've rephrased that comment to .... "Let's see what God can do ...." We will be prayerful hoping for the radial changes to be gone and that whatever decisions that need to be made that we move forward with God and faith that it is the right plan for our Nicky.

I had many people remind me all week that through God ALL things are possible. I had strangers walk up and hug me to say just that!

We have our amazing church of over 2000 members that never fail to lift our boy up - to my Brightmoor Family - thank you so much - to our friends and family and Facebook friends that continue to send support with posts, cards and inspiring gifts to remind us all the time that even when we are too weak to respond that you are all with us, praying showing us that you are always with us. Please know we get all your messages, at times when we really need a mood lifter! Thank you for your unconditional love and support - it means so much to us.

nicky134I have five special thank you's the first came in an inspirational children's book written by a friend of Nicks he knew growing up. Thank you for thinking of our son when sending this book to us.

The next came as a complete shock to me when a package arrived with a handwritten card from someone I danced with as a child that has her local church Sunday school make this bear for Nicky. I sat in tears when I saw the pocket of tiny index cards folded with hand written notes from children that were praying for our boy. I read them all ... Some so simple others so precious these are by far one of my most prized gifts because these children wrote to my son and have never met him.

nicky133The third was The Healing - I wept listening to the cd as I drove to my friend house that lost her son last summer seeking guidance. Thank you Momma B for this cd / bible on replay mode in my car now.

And Momma Lori - I am reading your BE HEALED ... Thank you so much for the book.

nicky1346And Lastly Chas, thank you for always lifting me up in your own way, I love my prayer braclet and it was at my door when I felt the most defeated.... Thank you ...

For all the people that are praying - thank you so much we actually can feel them .... we pray God gives us a clear direction in the weeks ahead ... and as it is said in Mark chapter 9 verse 14 on - "BRING THE BOY TO ME, Jesus said....."

Lord we are bringing our boy to you daily, for healing and direction and holding him in the faith of your perfect hands .....

Wow ..... I wrote this once already and it got deleted so - here it goes again. Nicky was scheduled for surgery to place a shunt this Friday. Monday he woke up and felt warm, I slept next to him on purpose...first time since high dose chemo 2 1/2 years ago he had a temp. So I text my Pediatrician through the day. Mid afternoon temp hit 100.7 She asked to see him to do labs and check him for the Flu. I am beyond grateful that my sons doctor trusts me enough to allow me to draw Nickys labs at the clinic from his port. He was tested for the Flu and came up positive for Flu A the easier of Flu's to fight. well Monday night end by checking him all night and no fever we went all tuesday and no fever - we thought we dodged it! Around 4:40am Wednesday morning he coughed and it woke me up sounding croup like, I leaned up and he was burning up - this is a moment when you dont do a temp you act,  I screamed for Nick- ice packs and stripping him down  with cold wet towels and advil. The pre op nurse said no advil so we knew we had to get him well and not chance anything and cancel the surgery. So I called the nurse and told her -I was not willing to chance it  .... his new surgery date is next Friday Feb 1. at 11am.so Nicky and I will fly in the day before surgery to go to clinic and see our neurosurgeon Dr. Boop. I probably failed to mention that his ANC is 1300 and was 1000 when I drew his labs - this is low - his body is over heating fighting to fix the virus battling him. Tamiflu is a shortage but he did a a few doses under his belt before no one could get it.

While all this was happening I spent last week getting all Nickys records to Dr. Yock in Boston, since she sees the most pediatric proton children in the world. She said that you must take into account all the treatment that Nicky has had, clinically how he looks and is acting. I bluntly asked her have you seen this before she said not exactly like this - yes I see edema with children that have had this much treatment and I think the shunt surgery is the first step because over time his ventricles are slowly increasing.  She thinks that there is radial changes in the pons area and that she has seen inflammation when this much treatment has been done. She also thinks scar tissue from healing could also be a cause and so this surgery is quick start to see if it will resolve both issues meaning the spine inflammation too. Only time after the shunt is placed will tell us if it is working with all areas of concern. She said the fact that he has no symptoms for any alarming issues is a great thing. I said, should I be worried.... she said as a Mom i know you are going to worry either way but she said I would not worrry about this being a secondary cancer. He has no signs and in that area you would see clear signs and it doesnt add up with age and being so early out from radiation. ( This is where I  am guessing - should I tell you I am afraid .... help me build up my faith? should I not tell you and act like its all fine - because it could be ... ? ) Honestly I don't know the right answer so I will say pray please ..... I can't sleep, I wake up with thoughts I want to erase and at the same time I want to just savor him and not leave his side ...... this seems wrong .... but this is in Gods Hands ... not mine.

While it was comforting to hear all the doctors tell me not to worry, nor do they think this is a secondary cancer - anyone that knows me knows I deal with Nicky stress poorly, hes my baby. So I will fix myself on the word of God and scripture that helps me ...when fear tries to steal my days.......

This wait till the next scan which is March 11 at 7:45am feels like a long wait and a ot of praying that these changes just go away and the shunt will in fact do what all the doctors are hoping it to do. I will update again if I can before or after surgery.

Thank you all for you love and support - and most of all your prayers - sometimes we get a message from you all and it comes at just the moment when we need it most. Thank you for loving our boy!

Hi all, well as you can imagine Mondays meeting with our doc paralyzed me - I guess you have to chalk it up to everything happens for a reason!

Last night my primary called and said no one is concerned with secondary growth or cancer at the brain tumor board meeting - it's simply radial changes that happen and can resolve ( I think I started breathing again).

The spine inflammation has been an issue since last May so we knew it may need to be addressed - so Today I spoke again with Dr Boop from neurosurgery and the syrinx surgery seems more of a gamble if it worked and it may need to be repeated multiple times - he talked about a 3rd ventricle ventriculostomy which may temporarily fix these issues or a shunt that indeed will resolve all the issues but that's a permanent thing - while we have avoided a shunt for almost 3 years - we are actually relieved that we have a solution and it will aid all issues - the best part is Nicky has no symptoms from inflammation and he is cancer free !!!This procedure is nothing like the syrinx surgery it is a one over night stay and released - it is the most common procedure a neurosurgeon does. He also said the other area is just radial changes. (whewwww again)

My doctor tossing guesses out to an educated momma was not appropriate until they knew especially with fatal guesses at that - I read the reports today and they only say subtle changes, more than likely radial changes - so far off from what we were told leaving Memphis devastated believing we had no chance - surely it has made us more grateful and even more humble than we already are - we will be making decisions tomorrow but this is not bad news !!!! It's just something that Nicky needs and we are totally ok with that! So pray for a quick recovery where ever we choose to do it at. ♥ thank you so much for your support prayers and love!

So let me share with you our little guy before MRI Monday ..... our tears have stopped God has showed us the power of prayer AGAIN ..... please continue to pray as we will scan in 8 weeks again.God IS Good All of the time ....

I know how overwhelming this has been for some of you .... for us - it stopped our world. Tonight we waited for St Jude and our entire team to sit in a room for Brain Tumor Board meeting and review Nickys case. The Oncologist, Radiologist and the Nuerosurgeons all met to discuss our little man.I need to thank everyone for your texts, private messages, your emails to encourage us and your love and support .... we are blessed!!!! Sorry that we can not respond to all the amazing messages you sent us!

Monday night I left St Jude DEVASTATED ... that's an understatement truly, I came home and contacted doctors and emailed them and I just couldn't wait for them - I needed to do something for my baby. I sat with a fully charged phone for an hour waiting for the St Jude screen to light my phone up. It was our doctor that said that everyone agrees that the surgery is needed on the spine -  FINE .... bring it on!!!! So we are again packing in a few days to go for a 4-5 possibly 6 day stay in Memphis.

She then said there were mixed views with doctors believing that the two issues could be connected. Our radiologist in Jacksonville said - it would be such a rare situation that these two oddities are happening at the same time without being somehow connected. Through him I learned that our Jude radiologist also leaned that way. With that being said Neurosurgery was not convinced that they were connected. Our doctor said this surgery is going to have everyones eyes on it, it will be interesting to see how this plays out and if in fact the area of concern clears up and resolves itself because in radiation it can and does, we have seen it ourselves. While everyone agrees there is no solid answer physiologically as to why these two areas at the same time had issues ... lets see what this surgery does. 

With that being said ..... THANK YOU JESUS OUR LORD AND SAVIOR ..... I asked are they still considering that this is a possible secondary cancer or anything growing.... her answer was no, they are just radial changes - it would only be concerning if if kept changing when it could resolve itself as most of the post radiation things eventually do.  DO YOU HAVE ANY CLUE WHAT THAT FELT LIKE ????? I have been reaching out to families with tumors in that locations for questions, signs, what to look for .... Nicky has not one symptom.

A test of faith .... NO DOUBT .... and still nervous about the surgery - of course ..... praying this surgery relsoves both issues is a huge possibility and a relief that I can not being to explain. I am GRATEFUL FOR GODS MERCY .... Prayerful that this surgery could be the key to resolving this inflammation - even if it is gradual. I have the right surgeon and I know GOD guides his hands .... Please keep praying ... because this wasn't a big bandaid on this situation any brain surgery is a big deal and healing and pain management is a task I am ready for - anything for my NickyBear. We are planned to go to Jude either Jan 23 or 24th for meetings with them and then Surgery is 7:30am Jan 25, 2013.

While no I don't wnat him to need at surgery - he needs it and I know God like he always has will show his mercy and have HIS HANDS ON IT. Because that is what he doesn't even in the scary storms .... He is ALWAYS with us. My husband reminded me of that while I wrote to Beaumont Hospital for records to be released to Boston Mass - regardless of anything - Dr. Yock will be meeting again on Wednesday next week with her Brain tumor board and reviewing Nickys case. You might wonder why I would still do this and work my butt off to get them everything ...... I want the best - this is my baby this doctor see the most proton radiation children in the world and I want her voice on this and she will now be our second team working with St Jude, she will review his scans and be another sound voice. Our Doctor did speak with Dr. Yock today about us and well they all know that this MOMMA doesn't stop when it comes to her Bear ..... I was already working away at records and getting the best this world has to review him. The rest we must leave in GODS HANDS.

I wrote this last night on facebook :::::

Its not about trying harder---- some of this only happens through prayer---- We are powerless to anything except prayer and that is the MOST we can do - we can not confront evil on our own, we are not that good, but prayer- engages is with the power of heaven - I believe, but help my unbelief - stand with us in prayer for our son our beautiful Nicky - thank you Pastor Jamie-Kim Kjos for these words I just watched from this Sunday we missed but were able to watch upon returning with our hearts in knots - please when we are weak intercede in prayer for us believe he is healed because we are going to do our best to believe ! Satan you will not touch our child! He is from the Kingdom and God will not let him be harmed - if I travel with evil - I will not leave without CHRIST - prayer moves the hand of God - this is the book of Mark

While I leave this entry ---- We never got to share the news we got an hour before the results ..... we were told in May that Nicky had lost his hearing completely in his left ear, so for 6 plus months we thought that his hearing was gone and his right was weak ... he proved that God again is ABLE ..... he can hear from both ears and his hearing is not as strong on the left but that he qualified for hearing aids on both ears - we were amazed that what we thought was gone forever - God has restored .... I need to say that Mays result was a flat line no response at all on the left you should have seen our faces when we knew he could hear ...... THANK YOU LORD ....

While we still have mountians to climb and still need to pray for this area and surgery, please help us move mountians in prayer  ..... prayer is an amazing thing and the only weapon we have and I am so blessed to have an amazing husband that has been here every single minute with me, praying and supporting me being that crazy mom reaching doctors and wantings something to hold on to.

Please pray this surgery is quick, successful and healing is swift ...... I can not ever being to thank you all for your continued prayers ..... PLEASE KEEP THAT PRAYER CHAIN UP ..... long weeks and healing ahead  and a scan 8 weeks from now so we will have more answers and prayerfully - we look forward to hearing NED again - which by the way this scan was NED ( no evidence of disease)  .... with a spin of stress and questions.....

We love you for loving our son .... I will update after the next review from Boston next Wednesday before surgery next Friday .... so we will keep you updated as much as we can.

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