Updates

Teams Have Met - Mixed Opinions

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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 brain stem 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 PET as well. So two days of sedation. The reason for it is if it is radiation necrosis they want to start him on a short bout of steroids to stop the damage. They don't feel comfortable without doing their own imaging to just give him steroids. 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!

Family Update - News!!!

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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!

MRI Tomorrow at U of M Motts

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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...

Delayed -Results - More Wednesday

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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 recurrence 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 steroid 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!

Update - sorry for the delay

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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 ....

Update::

Updates

Teams Have Met - Mixed Opinions

Family Update - News!!!

MRI Tomorrow at U of M Motts

Delayed -Results - More Wednesday

Update - sorry for the delay

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