So a week of calls and waiting and more calls and emails. Been processing it all and Judes urgency to get us there so quickly has had me really emotional. So our Schedule is this we leave Sunday June 30, 2013 and he will have his labs and clearance. Monday, July 1 he is slotted for a 7:45am MRI which will take longer than normal because of the extra imaging. We will meet with his Neurocologist that day at 1:45pm to look at the scans. and at 3:00pm we will meet with his radiologist to go over them also.
I am still waiting to here from Nickys proton radiologist who was out of town last week and his neurosurgeon as well. Tuesday, July 2 we have another audiology appointment that we are hoping to get re fitted and turn down the sound on the hearing aids. Then currently we are meeting with ENT there about closing the hole in his right ear - which I am currently trying to get done here before getting there --- ahhhhhh unreal all things that I am trying my best to do before we get there. I still have to reach ENT down there and see if they will close it or not while there - if not its a waste of an appointment and it will get canceled.
Wednesday July he is suppose to get the spectroscopy where he is again sedated. I believe this is the last test he will have and then we will meet with his neurosurgeon after that. Brain Tumor board meets at 3pm every Wednesday - so they will do a full review on the scans and the spectroscopy if we choose to do it.
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 the rush. 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! Its put stress in the middle of a summer that hasn't started really and we just need good reports so we can come home and breath and enjoy our family.
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...
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.
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!
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
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.
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.
Saying 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.
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.
So, 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.
I 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.
The 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.
And 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.
Not our typical update - far more concerning and I just truly am scared.
There is any area in the pons/ the brain stem area and it has radial changes and is abnormal. This was not there last scan from what my doctor said.
They have never seen it before 2 yrs out from proton and they are all concerned ( 3 doctors looked at it already). What this means is that while he shows no sign of relapse - it is not ruled out what they are looking at is not a secondary cancer induced from radiation. Our doctor even brought up that it is like DIPG, though she has the DIPG tumor Doctor look at it and he doesn't believe that is it that but agreed this was abnormal. For those of you that do not know the term DIPG it is a type of tumor whether cancer of not that grows in the brain stem and is lethal and there is no treatment to cure it. Children diagmosed with that disease have a 0% survival rate. For her to even compare this abnormaltiy to such severity when my doctor knows I am so educated in brain tumors was really concerming - because I understood everything she said. She is 100% this is abnormality is radiation induced.
I am numb..... I am praying to God is it nothing at all .... but terrified, She will be consulting with Boston and speaking with Dr Yock and MD Anderson as well since they have not seen this before. As if that wasn't hard enough to hear she said its reassurring that he is behaving normal and looks great, then follwed that comment with if he has swallow breathing, you notice him snoring or becoming limp or one sided weakness this is signs that cause for immediate attention to us ...... ( those signs are the signs of any type of brain stem glioma and are all lethal diagnoses because they are non operable, thus treatment only holds it at bay for so long. I am sorry if my last post was all over the place I had 5 minutes to write it and was surely not expecting this news at all.
We just got home to process this and jumped on a flight immediately. The second issue is that the inflammation has grown from two spots to one larger one that does require surgery so we will be back in Memphis for this in the next week or two - THIS IS NOT CANCER AND NOT RELATED TO THE ISSUE ABOVE. Again I can't wrap my head around any of it so please just pray for us and pray to God that this spot is going to be nothing concerning.
All I can ask of you is that this new concern be prayed over and over .... because I want my son to LIVE .... so I beg you to understand that this is scary and real and we are going to be on our hands and knees praying over this ..... we truly ask you to do the same for him. Thank you for all your texts and voicemails and facebook posts ..... My heart is torn tonight and my mind is racing ..... I will write more when I hear more from the doctors.
I hope you all had a wonderful Christmas and New Year.... so I realize I haven't updated since the last scan report, I apologize for waiting so long to update you all.
To start this Sunday we fly into Memphis to arrive at St Jude's to head to the medicine room, which acts like an ER after hours there so that Nicky's labs are done and he has been assessed for his MRI. His MRI is Monday morning so here is how we ask you to pray: that he remains cancer free, that the inflammation they saw as stable in his spine will be gone or greatly improved - that no infection will be present in his body - that his hearing and vocal cord are restored completely. Our Lord can do it all so we ask you to pray these requests for our Nicky.
(photo above in October a legofest) To update you Nicky has been a joy, growing ( 3 inches in 3 months lol and 3 more lbs too ) he is happy and loves to cuddle. He knows exactly what to do to get what he wants now - he solves everything with a hug, kiss and a big Muah sound lol. He is really funny when he is done with anything, or doesn't like the channel or doesn't want to be somewhere he waves and says, "BYE" repeatedly waving and looks at us like get the point lol.
( This is a Halloween moment) He has mastered iPads, IPhones and APPs , he can take photos and videos too and its mind blowing he knows how to get to his favorite games and plays them and has a thing for YouTube, even when we delete the history he somehow knows how to find these CAR Disney Pixar toy reviews! Crazy! His memory is spot on!
He also loves to wrestle with Daddy and Christian. This Christmas he was so into opening presents, all you could hear him repeating was, "Whoa Whoa, what's that?!?!" Oh Oh ... What is that!!! ". It was really cute to see him so excited and honestly trying to rip open everyone's presents lol - he surely caught on this year!
On a different note, he has yet another nasty ear infection that led us to ENT yesterday. We aren't sure why he's having chronic ear infections but it has happened the last 4 scans that he just seems to get these bad ear infections that last 2 weeks. Because of chemo he's so resistant to so many antibiotics that he needs really strong ones to help rid him of these infections and his immune system still is not where we hoped it would be by now so it just takes longer for him to recover. We are relieved that all the symptoms of the inflammation in his spine he exhibits none still which would be balance issues and fatigue. He is a ball of energy bolting up and down the multiple levels of stairs with no help at all and he rarely takes a nap anymore. On a side note we are hoping to see audiology at St Jude if not then back here to have Nicky fitted for a hearing aid on his good ear, we believe his normal hearing range may now be an issue with knowing he lost his hearing in his left from radiation over the last two years. Just one one the many scarifices to have his beautiful face here is all that I need to remind me that these things are managable.
As for the holidays, we are grateful our son has enjoyed them and that we are all together. I am constantly reminded of the parents entering and dreading the holidays without their children. For some it is their first year without them, others its been 2 years but feels even longer. I can't help but cry because I can see their faces, each one as I write and my heart bleeds for each family. We have many children so sick and some on hospice --- long days for these families praying for one more day every day. It's difficult to not mourn with them for them and still balance being grateful for how far we have come. It's an emotional roller because of the love I have for these families and children.
I am trying to keep my posts as light hearted as I can because I have been told my posts, the reality is just too much for the people following our Nicky. I will not apologize for paying respect to the children we have lost and continue to lose. Like I said I am "trying" to keep these posts as light as I can too.
I will close with this, a Momma I love that lost her son this summer sent an email to me a few days ago. Her company is matching every dollar up to $25,000 donated to a 5k run with all proceeds going to St Jude brain tumor research. That gives them a chance at raising $50,000. I was choked up when I told Nick about this - it seems that finding a cure heavily relies on the parents effected by their child's diagnoses to carry the burden - it was said in another interview from TheTruth365.org from parents losing their son - it becomes the responsibility for us as parents to pound the pavement to raise awareness and funds to help our children.... That comment stuck with me reading Luca's Momma's email. I told Nick it hurts me to see parents that lose their child fighting so hard for us still to have a cure, yes they do it to honor their children that they greatly miss - but they do it so that they carry out a mission placed on them - truth is it should be everyone's responsibility to pound the pavement and it shouldn't take parents of a child who passed away to carry us all. How many times have you heard me says 46 children are diagnosed a day? 7 die everyday. While on Dec 14, 2012 our nation watched in live time in horror that 20 innocent children were gunned down among the adults in a senseless unthinkable crime. While I can not imagine a massacre in such magnitude - I still can't imagine 46 children are attacked by diseases that have no cure - that children are tortured through unthinkable treatments while parents pray that the drugs or radiation will be a curative.
So while Facebook is lit up with gun control comments, can't we try to focus on awareness for cures for the 46 children who will be diagnosed today and every day there after until we have truly found cures.
This is Luca's 2 minute video - I hope you will stop to watch it and if you have funds donate and if you can't - pray - pray that 2013 will bring amazing cures that God will gift researchers with the treatments these children need!
Deadline Donations should be made before Friday, Jan. 18, 2013.
To Donate by Check: Please make checks payable to: “Spectranetics Corporation” and mail to:
Spectranetics Attn: Sue Marquardt 9965 Federal Drive Colorado Springs, CO 80921
Thank you so much for your continued thoughts, prayers, support and generosity! Kisses to Heaven, to Luca and to all the little angels who are with him.
I will try to update from St Jude when we arrive or on Monday after the scan results! Please again pray for our NickyBear and every child fighting a life threatening disease!
Thank you for all the blessings you have bestowed upon us in 2012 and we pray for 2013 to be a year of healing, renewing of our hearts and continued compassion to be the voice for these babies. We ask you to bless our followers for their prayers and sometimes praying on our behalf when I crumble over news of another child gone too soon. Lord give us the strength to continue to support other families and to grow in your faith daily. We seek miracles and we know you are a God of miracles ... Please keep our Nicky cancer free and without inflammation! We give all glory, honor and praise to you and we thank you for each person that is reading this blog ....In Jesus' name Amen ...
It all starts at check - in, but first I am in awe I am sitting at home today looking at the time and knowing I was suppose to be sitting in a waiting room after surgery or recovery with Nicky. GOD IS SOOOOO AMAZING. .... don't you like knowing the ending to this update first though? (smile) ... if you don't read below - MRI CLEAR ... Surgery CANCELLED! I want to update you on the entire trip that we expected to stay for a week longer.
Nicky and I arrived on Thursday and checked in and scooted to the hospital to get accessed and a stop at the triage. It was the first time he was willing to get on the scale alone and do his height. I was so proud of him being such a big boy. We then have our first follow up visit at the endocrine clinic. The endocrinologist said the only reason we haven't met them yet is because everything with Nickys labs so far show that the treatment has not effected his growth. This is such a blessing.
They try so hard at Jude to make things welcoming this was our room while we waited for the doctor. We played while waiting but the wait was a little longer than Nicky liked so we walked - thats nothing new at Jude - never walked more in my life than that campus.
So his levels are all within normal ranges, his growth is all within normal ranges. The doctor said she would call with the newest labs but never did. I can only assume they were good!
So we finished the night off in normal Grizzle House fashion - Domino's pizza and the playground. this picture says it all - this kid is a happy boy!
He wasn't thrilled with the idea of having his port in his chest all night to I talked him into more playground action to keep his shirt on. The following day was the MRI and well - I wasn't the happiest person because Nick's flight was delayed, then canceled and then switched planes. I didn't know if he would make it or not and I just wanted my husband with me.
This photo is the morning of the MRI in the waiting room next to what I call the NEMO fish tank because every NEMO fish is in there. It is a distraction but not when you are waiting 2 hours. He wasn't happy and Momma ... yeah me too. But we finally got back there and got him in the normal MRI Tiger jammies.... he was being good for a while until we realized 45 more minutes of sitting in the same room. Crayons get boring quick.
So we got to hang out with Dr. B and I just love this man ... so kind and gentle and an Angel truly with sedating babies - he's just a gifted doctor! You can tell just by his gestures and how he holds them and interacts with them - he never forgets a child ..... one of Jude's greatest right here!
As you know the results have me just in awe today ..... thankful .... grateful ... humble .... thanking God .....
Nicky slept the whole flight there and the whole flight back ... couldn't have been easier to travel with. Still just so happy to be home, and I was so happy to walk into Brightmoor my church on Sunday! Just wish Nick could have came.
We only left with one thing we wished was a little better and that's his counts still not healthy enough to endure chancing him being in a school or around other kids. His ANC is 1600 and this is almost 2 yrs after proton and a year and a half after treatment. We will take our small issue and shut up!
So his Birthday we WALKED .... he turned 3 and we walked with so many on our hearts including our son. - we have yet to throw a party but did have cake privately for him and got him a few gifts to celebrate God giving us another year to be so grateful for.
He's finally exicted to open things so next year we will have one great big birthday for this little boy.
Oh how he loves CARS .... its awesome - such the little tom boy all the way. I want to tell you about the walk .... it was amazing and instead of posting a bunch of photos - here is the video. To my contributing donators I can never thank you enough .... my walkers - you inspire me because you walk without knowing this total impact but took the time off to be with us when that means the most to us and to our prayer warriors .... we need you to keep the faith - you inspire us too when we are weak. God is great ... God is Good ... God has a plan .... sometimes we just can't see it.... But this you can.... I loved that our Pastor put us over the $2000 mark and we had to rise the amount and raised it again and again .... Nicky was the 2nd place higest donations raisiing $4,165.00and our team .... $5,665.00 total .... GOD BLESS EVERYONE THAT HELPED US ... HUMBLED is an UNDERSTATEMENT! If you can't see the video below click here ! VIDEO HERE
Hi all, gonna make this short and sweet - MRI is cancer free N.E.D. (no evidence of disease) Our second situation was - were we going to have to stay to have surgery for the inflammation in Nicky's spine ..... happy to report that the edema is stable and the neurosurgeon said in some areas look like it has in fact improved!!!! We are coming home tomorrow - sighhhhhh can't tell you how much we needed this news. It came with a trade off that we re-scan in 3 months verses 4 but we will gladly do that to avoid surgery.
I also want to THANK YOU HEALER ... our LORD JESUS CHRIST FOR THIS NEWS ..... our almightly healer has his hands on Nicky and your prayers along with ours were answered. I want to thank another ependy mom Yuko that told me how much Boswellia helped her sons edema and to try it. We only had 2 1/2 weeks of this herbal supplement under NIckys belt but we know that it must have healing agents in it. The other name for Bowellia is Frankincense - if you google it you will find that upon the birth of baby Jesus this was given to him along with Murph by the 3 wisemen. They say that the Frankenisense was for healing and the murph would be used to embalm our Lord as God knew His sons fate. We believe God gives us nautral herbs to heal and we believe that the next scan keeping him on this will show even more imporvement if not gone all together ....
Can't wait to come home ..... THANK YOU FOR YOUR PRAYERS ...... THANK YOU JESUS !!!!
From another Jude Momma (Ana Castro) Matthew 2:11 "Entering the house, they saw the child with Mary His mother, and falling to their knees, they worshiped Him. Then they opened their treasures and presented Him with gifts: gold, frankincense, and myrrh."
I gave this speech just a few days ago, I hope you will not only watch it but share it. Our son turns 3 by the Grace of God and Love and Prayers for you all tomorrow. Many of you have given fianancially so much to help aid cures. This is the last time we will be doing this walk for Nickys Birthday and please pray for our trip to St Jude next week and for our son to remain cancer free and without inflammation. So many of you have given fianancially to help aid cures, may God Bless you for doing so and if you planned on doing it here it is one last time.
God Bless you .... I will be updating after the walk and posssibly from Memphis to let you know how things are going down there. Storm heaven for Cures and for our little man.
THIS YEARS WALK IS ONLY 10 DAYS AWAY PLEASE CLICK BELOW TO DONATE OR REGISTER TO THE 2012 WALK
Summer recap since this is September and pediatric cancer awareness month I want to share with you what it truly is like to walk in my shoes today. I have battled with the rawness for this post - but find it so honest that I must post it.
I watched this video and sobbed last night .... I followed Ronan the child this song was wrote for and last year I asked many of you to sign a petition for allocated funds for pediatric cancer research to our government because of someone that was Ronan's moms friend. If you can not view below this is the video link. http://www.youtube.com/watch?v=1ITrd7fM6aY
I cried watching this, after all my son has been on a baby ( under 3 ) protocol and I can't count how many children we have loved and lost now - not just the babies but so many children in these few short years. So with that being said, this summer as "normal" as normal is now .... I would get anxiety when I saw a graduation party card - would my NickyBear God willing graduate? I stood at Christian's 5th grade graduation and when they said class of 2019 ... I teared up thinking of all the mom's that lost children right before this milestone and again wondering will I see my NickyBear walk across this stage and be a graduating 5th grader? I take nothing for granted and absorb every moment with him, at times hoarding him and just loving him. Can you blame me? I love when he just hugs me, its like I need it more than he does but he doesn't let go ..... ahhhh I love this little boy. I listen to the words of that song "Ronan" and pray to God that I have more than the best four years, or the cars on the floor or I remember your blue eyes looking into mine like we had our own secret club, I remember you dancing before bed time then jumping on me waking me up, ---- I want a lifetime for him so much it hurts me.
I feel like I shelter my readers and sound so profoundly strong, when in fact I have had no choice but to pick up the sword and slay the dragon ( cancer ) with all my might!!!! I am strong because God carries me, and my husband is there for me - but it is a struggle that is unimaginable to anyone that has not walked our my shoes. We walk for his 3rd birthday a week before he is due for surgery, a surgery we are still praying he won't need but it is in fact scheduled and I can't help but think of all the children that we lost that will never earthly turn 3. It is overwhelming. I fell in love with too many families, too many children not realizing my heart would be attached to the yo-yo string that is cancer. I have learned through my son's journey, that I love more than I ever thought possible and I hurt more than I ever imagined one could. I long for parents that lost a child to be reunited with them and I pray for cures and God grace to surround them.
I can't begin to imagine my son in a hospital bed again or recovering sleeping to the sounds of monitors and nurses checking vitals but I am ready for whatever God has in store for us - I hate it so much for him .... and I hate what he has been through!
I realize asking for donations for CURES when many of you have already given is a huge request to knock on your door yet again, but I truly ask that you consider it, even if you can only give $1 to research .... this is your official invite to Nickybears 3rd birthday party .... we WALK, we ask you to not just donate but be there and experience this unbelievable movement for children and the demand for CURES. If you can not walk, be a virtual walker - its only $10.00 - if you want to walk but can't afford it - let me know I will find a way! I know times are tough for so many people, but like I said I am not going to keep asking the same people to step up - next year we will have a normal birthday party because this little man deserves one, but for now we must do all we can for a CURE - we have seen too many children not get another birthday and that drives me to do this one more time this year. HELP US PLEASE .... we have never asked for anything to benefit us, but to benefit a CURE for ALL pediatric cancers.
With that being said, consider this - for any life event that you might have wrote a check to my son - instead of doing it later .... do it now. I know that sounds like I don't trust God, when in fact I trust him completely - as my husband said, "I don't question God, I just have questions" .... so instead of a birthday gift, graduation invite, a college gift or a wedding contribution - do it now while we can to something to find a cure so he can reach all these normal life experiences and I rather tell him later that people aren't sending gifts later because they helped us find cures when we needed it.
I have decided it is the last year that we will make this his birthday event because with God's Hands on him as he turns 4 next year, it's about time for cake and letting him have his first real party. He spent his 1st birthday coming off chemo inpatient at Jude with nurses and a St Jude cake - his 2nd at the walk and his 3rd ... WALKING once again .... I won't keep asking but I am asking now to please consider donating or being there with us please. You need to register ASAP please come WALK with us ....
PLEASE give us more miracles, more cures .... please comfort all my friends that have lost children. What a difficult summer watching so many earn wings Please watch over our Nicky and heal his body completely - please never allow cancer to ever touch him again and remove this inflammation!!! Please bless all our friends and family that donate from their hearts and for each prayer they have prayed for our family. We are so very blessed to have people praying so hard for us .... Thank you for ALL that you do Father .... please heal and touch someone we love that needs prayers to that one day you will restore this broken person and bring her back to us whole ....
Reminder .... Please consider any donation at all for the CURE SEARCH WALK Sept 22, 2012 its NickyBears 3rd birthday and we walk for cures and to honor all the children battling and the ones we have lost .... we have lost count so PLEASE help us find cures .... GOD BLESS ... if you cant walk consider virtual walking its only 10.00 and kids walk free if you walk ....
Working out the scheduling kinks of this pending surgery. I was beyond upset last week with my primary telling me that they wanted to schedule the surgery Sept 26th meaning admission Sept 25th. I told her I wanted to be home for Nicky's Birthday and the CURE SEARCH Walk and wow to line this up right after was an overload of stress. More importantly, she told us the scan didn't need to be done before this surgery. I went into my Raging Mommy Mode - that means DO NOT MESS WITH ME!!! I called neurosurgery and told them we are not scheduling surgery until his disease has been evaluated first!
Isn't that that logical choice to make sure that this issue is in fact needing surgical invention still and that this is the only issue that we are dealing with before performing a brain surgery???? I was red hot and emailed my doctors and told them there is no way we are having surgery without an MRI first. Apparently the neurosurgeon nurse and my doctor spoke and she told my doctor about the lengthy message I left her because my primary called today and Nickys MRI was moved to Sept 28th 8:45am because of course I wouldn't allow him to have a later slot either. I have become pretty demanding, but that's what a great mom has to do right? He will be admitted to Le Bonheur Sept 30 and the surgery is scheduled Oct 1, after all was scheduled, I had my own mini meltdown and cried and prayed in the shower for 20 minutes asking God for healing and strength to endure whatever we must.
Keep me strong Lord .... so how should you pray? - pray that God removes that inflammation and that they wont need to do any surgery ..... I am praying that over him daily, placing my hands down his spine and head and I need you all to also - I wont accept it unless I have to! My Heavenly Father please show mercy and grace to my little man PLEASE! Pray that MRI is clear and disease free! Pray harder because we need it please. Pray God restores his body without anything needed surgically. We know our Lord is capable, so please keep praying that this will resolve itself.
The following day, the above post we written last on Monday while I awaited the neurosurgeon calling me to answer 2 1/2 months of questions that had no answers from my doctors. I want to share a short video of our neurosurgeon so you can see why we will only allow his hands to be entrusted with Nicky's ( possible hopefully not surgery)
So let me list my questions so it is answered for you also:
1. ( THIS WAS MY LAST QUESTION, BUT I BELIEVE IT SHOULD BE POSTED FIRST!!!) Can this still change and not show up on the next scan ... he said "YES, I would have requested a scan been done prior to any surgical invention... " This answer is most important when we pray - yes it can change, yes its possible and so PRAY it will just be gone - In Jesus' Name .... 2. Could this surgery leave him with deficits?, the answer was" It is not near the cranial nerves so no its fairly easy but can be complicated due to how he healed and how he was closed up and what was used and scar tissue." 3. Does this procedure always work? His answer, Most hospitals have a 50-60% rate at working to correct the issue - he personally has the record of 70% and a little more - however if he feels that he can not just fix the issue he places a small line from the 4th ventricle to the spine. I in return asked if this changes with growth and he replied that it does not that it remains in tact and working, he explained that long ago that use to place a spine shunt but that they do not work so this is the only fix that long term doesn't need a second surgery. 4. What is the recovery? The recovery is 3-4 days and normally never after this do you go to the ICU they just want to assure the patient is stable enough to go home. 5. Surgery time .... that's up in the air they don't know because they don't know what type of scar tissue and radiation tissue scarring is there that may pose any challenge - but not long. 6. The incision, about 1-3 1/2 inches straight in the back of the head - ( NO HAIR CUTS FOR NICKY TO COVER THAT UP .... : ) 7. Pain management, first night might be tough but after that nothing Motrin cant handle.... sighhhhhhh
So after all that .... I remain so hopeful that my son can still be relieved by faith and PRAYER! Dr. Boop our neurosurgeon also said this is an elective surgery that may not be needed yet but eventually will if the scans show change, reason so is that this inflammation in the spine over years can hallow out the spine and cause major deficits so early intervention is suggested among the best pediatric neurosurgeons. Gotta love Boop!
My side notes - the surgeon was shocked my doctors did not think that evaluating for disease first was the way to go ..... I just can't imagine what my Dr. was thinking when this is our first 4 month scan for his brain. Nonetheless - bringing out the claws worked, THIS TIME!
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