Updates
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Breathing with the good news yesterday and the MRI being NED (NO Evidence of Disease) which some call stable or clear. His Doc emailed me while waiting to get on the plane that his CSF (Cranial Spinal Fluid) was clear. She let us off the hook from anymore infusions ... so relieved!!!! Thanking God today and everyday .... I wanted to share this pic with you after NickyBears MRI and we reviewed the scans he decided to grab Dr. Wrights hand and just drag her around, everyone that knows him knows that you can't say HI without him screaming because of stranger anxiety so this moment was priceless and I am so glad my camera was there! This moment was too cute not to share!
So this was our quickest trip to date at Jude arriving at 8:30am and going straight to the Grizzle House. Upon finishing our first day I saw a man entering the elevator and he had big rubbermaid tubs and so I said to him,"Looks like your moving in..." His reply was, "yeah for the next 4 months..." immediately I knew this child was more than likely on my protocol. So I ask, "under 3? " and he said, "yes 1" ..... His daughter was diagnosed with the same type of cancer as Baby Nicholas and the next day was their first day there. I always seem to find a *new family* and it always gives me great comfort to give comfort to those that are just entering this journey. Lord knows I wish and pray no one had to enter this world of pain ... but if I can just help ease someone's stress a little .... share our journey - than all the typing I do here on this blog is so extremely worth the effort.
I ask you to pray for a few new friends, her name is Willa Rose and we also met Lanie Watkins and Kade Watson ..... all need extra prayers right now.
Baby Nicholas' health is that of a healthy 23 month old little boy and has his temper because we spoil him so much ... but he is a picture of health and to us that is a blessing. Every time we enter Jude we are quickly reminded of how much worse our lives COULD have been and we pray be NEVER have to go down that path EVER again. But going there humbles you all over again, it makes you greatful for so many things even in three months you start to take for granted again. Hearing a child's raspy voice ... I remember not hearing my son for months and praying to God to please heal his vocal cords. Or seeing the endless bald babies and children .... its tough that WAS us!
We were able to go and hang out with Arianna's family and I got to really spend some time with Leticia, Arianna's Mommy ..... I ask you all to pray so hard for Arianna she scans Monday and Lord ..... this little girl needs you NOW please please touch her whole body with your healing hands! Another request for David P. and Aaron B. .... I can't keep up with so many Kids! We also got to met sweet precious Ivee and he Momma Hope ... so glad I got to hug them! Please also pray for Bray and Ivee....
We didn't get to do everything we wanted to do this summer, but over all we had a great summer and we look forward to fall. We did get one trip in to Bay Harbor and we are going to try to sneak that in next weekend before Christian starts 5th grade .... (wow time flies) He was able to go to an indoor waterpark with his best buddies while we were at Jude.
My Great Grandmother and Nickys Grandma had breast cancer - someone asked why I never walked for them, but for this I would .....there is something extremely wrong with a baby, a child having a life threatening illness. It is simply indescribable. It seems like an injustice that out weighs any adult because they simply have not had a chance. People say bald head is a badge of honor, it is not for a baby or a child that had no choice and didn't choose to be a hero and deserved a normal life ... it is simply wrong! 
Our summer was filled with emotions ... seeing Nicholas swim for the first time was a blessing and he has fallening in love with water now. His laugh is such a JOY to us and he loves torturing our dog Haley by chasing her everywhere. Can't say the dog likes it, but he sure does! He is spoiled and loved and eats pretty much anything you give him now. He is becoming a true 2 yr old and we are so grateful to God that He allows him to thrive and be healthy. He loves the bubble machine Daddy bought and will chase it everywhere. He still loves Toy Story and its a crack up that he organizes his toys in groups accordingly. One day he threw his pacifer at Nick and that was that, he never wanted it again. Odd,yes ... but great too that he no longer wants it. Christian has had a fun summer and got to see his friends a lot and spent time on the boat and lake with Nick. Skateboarding is his thing right now. The top pic was a trip we took to Bay Harbor and it was our first trip since his diagnoses. It was a good break from the world.
I will leave you with this haunting thought today .... while I debated what I was willing to share in this entry .... I spoke to a Mother today that lost her son just weeks ago..... her words will remain in my heart to remind me every day that this fight matters and that it MUST be won. She said, "You want to go back and somehow FIX this, but its PERMANENT and NOTHING can be changed, there is just this HUGE void that nothing can fill, the fight is over.... the HOPE ... is gone .... the BATTLE is over." These words are true and HORRIBLE .... I just listened with tears rolling down my eyes .... the only difference WE can make is by funding research, creating awareness ..... and PRAYING OUR HEARTS OUT FOR CURES ....I hope and pray that you do all you can to help fund childhood cancer research and create awarness.
So it's been a true month since I emailed an update though there is one below this that I wanted to announce but not bother everyone. What a month ... 2 months away from another Jude visit, stay and wait .... I have learned so much this month. While today I celebrate my son's 21 months old .... we lost another baby on our protocol. I know I asked for prayers for Ana Sofia .... she is in God's arms today.....I am thankful I got to see her a month ago in Memphis .... I was able to touch her leg and say property of you Lord.....I hugged her Momma and I walked away just defeated from her room .... I just can't comprehend it .... I remember being in that very same room for an inpatient stay .... it was so hard to walk away and I came back the next day to say goodbye.
It seems hard to believe we had a scan just 3 weeks ago. You all know me and every word in those reports replays in my head from the priminary reports to the final scan reports. I try to not over read their vague answers to certian things they deem notable. So upon leaving St Jude, Nick and I agreed if Nicholas did not lose weight and we stopped his bolus feeds through his Mickey Button (g-tube) that we would remove it. So Friday morning, June 10 at 1am we removed it. It took less than 5 minutes for me to remove it. He isn't too sure about having the bandage on him as you can see in the photo, but its been a year exactly since the tube was placed. Brings tears to my face these small victories .... a whole year exactly .... when I pulled it I didn't even realize the date was the same date we were inpatient over night at St Jude from having his line and g-tube placed. I can't tell you how nice it is to see him without having to wear a onesie to cover it from his grip! That he will be able to go swimming for the first time in his whole life this summer .... any cancer mom that has had to walk the path of their child losing their swallow can relate to the fact of how incredible it is to watch him eat! I cried throwing away the rest of the feed bags and packed up the food pumps to ship back to Jude .... so many times I never knew if we would reach this goal ... but we have by the grace of God ..... I have so much more to share with you about being back home without chemo schedules ruling our lives .... I will share more when I have time .... but for now I needed to share this blessing with you all ....
What a week! I have to go backwards because as you probably already know I wanted to tell everyone about NickyBears scans and that they are stable. So let's start with Sunday - We missed our first flight going to New York for Celebrity Apprentice's season finale'. I was in tears and so stressed because it was becoming increasingly apparent that Baby Nicholas' stranger anxiety was times ten in public. I called the St Jude rep and they got us on the next flight into New York. what a complete mess trying to juggle a really traumatized child and strollers and bags times 2 because we had to have toys, diapers and food for an entire week at Jude. We finally arrived and he did not sleep so I was hoping to get ready while he napped but I had asked Kim (Christian S.'s Momma and her Momma ((Momma T)) to come see us. While it was great to see them, he slept and showed me just the tip of how fussy he was going to be with new people. It really stressed me out because we lived in Jacksonville with them and we visited together the whole time we were there and Nicholas was fine with them, but did not remember them: ( . This goes to show what 6 months of isolation on oral chemo can do. I do not regret being so protective and cautious with him though because we did remain without going inpatient the entire time! We also got a visit from Mei Lai (Minty's Momma) she played a specific role into getting into the group (ependyparents) of parents that dealt with the same diagnoses as Baby Nicholas and that led me to Tamiko, Colin's T.'s Momma that gave me our protocol. So It was worth the rush and fuss to get to hug one of the most amazing women that helped me while she herself had a daughter battling this disease and treatment was not working. Some of you remember me mentioning her and when she lost Minty the day after her 1st birthday..
As you all know, Mr. John Rich invited Nicky and I out there and in my heart I thought there must be a reason why so I felt like I needed to do everything humanly possible to help aid him using the video to honor the babies of the brain tumor protocol, even if I had to fly to New York on my son's diagnoses date. I was mostly sad that we couldn't go inside because the loud crowd was upsetting Nicholas. We sat in the hall to watch it. A short story while I stood outside of the theater moments before John Rich won .... 3 NBC workers were sitting outside with me and my son and saw Marlee's footage - I must say it was moving .... one man said wow - how can she not win right? - then shouts to me with my back to him and says what do you think? I said, " Well I am a bit bias since I am a St Jude Mother .... I said I would love to be dealing with a hearing deficit where all i needed to do was teach my son to sign, (most people don't know, I speak sign language because I am hard of hearing in my left ear and was told I would probably lose my hearing completely, I NEVER DID and hear just fine) but instead my son is fighting a disease that has NO CURE and I have no peace with what the future may bring ..... I said tonight a year ago today, May 22, 2010 my son was diagnosed and my whole life changed ... and now I am sitting outside a theater with so much hope in my heart for the 41 families that I have releases signed for that the video would honor their babies. I struggled with coming and then never got a chance to even thank him personally for writing the song. I told the man - St Jude gives away hearing aids to any child fighting cancer from anywhere in the world that is deaf or has hearing loss regardless of insurance - most children receiving chemo or radiation for a brain tumor have hearing deficits so while both charities are simply amazing .... we need cures more than anything!
We went to Med room for our monthly infusion of pentamidine and when we finished the room was filled with balloons, our doctor and our nurses singing "Our patients have the cutest S.M.I.L.E Our patents have the sweetest H.E.A.R.T. O, we love to see you everyday, But now it's time we get to say, PACK YOUR BAGS GET OUT THE DOOR, YOU DONT NEED CHEMO ANYMORE"..... we were officially done! We come home as a family, to celebrate are small victories in this world of cancer and we are so grateful for the family and friends that really allowed your hearts to understand this journey ... a year ago this weekend was after his surgery and our son was coding (which means code blue - possibly dying) and having upper respiratory failure, he couldn't breathe on his own - I remember throwing my body against the wall and falling to the ground crying while all the PICU staff rushed to his aid. We didn't know if he would make it after surgery watching monitors beep ....I remember a phone call to my little brother and my heart stopped when I heard him at a party on a boat with loud music while my world just totally stopped.... it was then in that moment that I realized - some people get it and some people don't .... some people followed every journal entry and some people read none. Some left messages even if I couldn't return them, I knew you were with me. Days when I could barely get through, some of you prayed with me or for me. I would get random texts from friends and I would tell them to read this site and they never did ... some whom were distant friends, some not really friends at all .... but they loved us and prayed so hard when we needed it most ... you know who you are - we communicated through it all -YOU WERE THERE - TRULY THERE and we love you all so much for your support .... in this year real friends stepped up, people we thought would be there weren't .... we learned a lot ... we learned what was the most important and what truly does not matter .... please never stop praying - as I have said before there is no cure for what my son and many many babies and children endure and our doctor said the pharmaceutical companies can not make enough off of childhood cancers so no one funds new drugs and some that work are taken off the market because no profit is made from them. Do not be confused that American Cancer Society DOES NOT help pediatric cancer truly .... they just don't give enough ... please please when you have it donate to St Judes. It on this site to your right ....
Wow where do I start.... first the important news .... he had his MRI scheduled at 8:30am ... prep at 7:15am - we were told yesterday that our time changed to late noon and it of course was upsetting trying to figure out how to keep him happy without eating all day. The scheduler asked me to stop by to pick up a new schedule. I headed over and saw another family and a child in a wheel chair that clearly was pumped with massive steriods, so swollen it was heartbreaking. I asked the mother if she was there to get a new MRI schedule, she said yes. I asked what time, she said 7:15am. I responded you took my time slot, but thats totally ok. I felt so humbled looking at this little boy in such a poor condition. She said she was so sorry, I know its hard not to eat that long for a baby. I responded, please don't apologize it ok, he can wait. I then asked her sons diagnoses. When she said DIPG my heart sank and I realized then that at Jude when a schedule changes, there is a very good reason for it. I will never again question a schedule change. The severity of his condition was heartbreaking. So a few hours later I got a call from the schedulers that told me that we had our initial time back and that the emergency scan was canceled because the child was too sick to scan. While I as glad to take that spot back, I didnt want it knowing another child was so very ill.
A few minutes later my phone rang and I had Nick answer it since I was maxed out! She said it was a terrible day and that everything was NED (NO EVIDENCE OF DISEASE) That means clear !!!! CSF (Cranial Spinal Fluid) Clear of cancer cells. Long breath .......she also had no clue the schedulers were telling us to wait, she felt bad about it but she didn't know. As we walk into the Grizzle House a tornado watch sent us all into the stair wells! This is becoming a new habit while we visit Memphis. I will report back with the rest of the details later .... but I just wanted to tell you the 8 hour wait really stunk and I know people wait days ... we are just so spoiled at Jude and our Doctor. Thank you all for your prayers .... you have no idea how grateful we are that we FINALLY get to come home no more chemo or meds and just enjoy our family for the first time in a year!!!!! We can't wait to be somewhat normal -though our normal is very different we are embracing and new normal and praying for scans to remain cancer free always. To the ones that read our updates and truly have been with us through this whole journey - THANK YOU SO MUCH you have touched our hearts and we know who you are .... We love you ...
Our week off from chemo was great, and with that came our weekly labs ANC 1200 hgb (red blood) 10.8 and platelets 155. We had our monthly hospital infusions a Rose Cancer Center at Beaumont Hospital. We also had our monthly pediatric appointment. Nothing to report thank God! Thursday our fedex package came holding in this box our last round, cycle 6 of oral chemo that was started Saturday May 28, 2011. Mixed emotions starring at that box .... we are 28 days away from NO MO CHEMO!!! That's slang used at St Jude with the kids. Its exciting to be done, but its scary to feel like we are doing nothing soon.
The first week on this wasn't too bad, and I apologize for not updating sooner. This is a stressful time of year for me, a year ago is when Nicholas starting showing symptoms and I seem to find myself replaying everything leading up to May 22, his diagnoses date. It's emotional. To top it off, out of all the holidays of the year ... Mother's Day and the idea of so many AMAZING Mothers I have met, loved and call my friends lost their children this year to cancer. Not only did some lose a child, some lost their only child. I can't help but mourn for them, I wish I could just focus on me... but God just created me to wear my heart on my sleeve and I can't help but hurt for them.
Baby Nicholas has finally gained some solid weight and hes eating great. He loves it outside so much and chasing the bubble maker machine daddy totes around the lawn.
Please cut and paste this link and add it to your facebook page as a comment. 
This was Baby Nicholas Easter Sunday outside, for a moment my heart was happy taking him outside and then I realized it was so bright he needed a hat. I went in and grabbed a hat, the hate made me stop and fall to the ground .... it was a gift given to us from the Bailey Family (Rykens Family) I couldn't stopt thinking about all my friends that lost their children. Another holiday for families I love to "GET THROUGH", its wrong .. and we need cures... it was hard to be happy when I realized this.
This week Baby Nicholas wanted to go outside and boy he LOVES it. It was nice enough and so his Daddy took him out. He loved the wind blowing in his face and it was like someone was stabbing him trying to get him to come in. He is soooo spoiled but we wouldn't have it any other way. Yesterdays labs his ANC is 1112 and his platelets 175 and hgb (red Blood) 10.4 all dropped but not terribly. He has one more full week on this chemo and then a full week off. I was really bummed when I bought him an outfit for Easter not realizing it was his last week of this chemo that drops his counts and not realizing that it may not be safe to take him to Easter Sunday at church. This past month our church now offers LIVESTREAMING video online and on IPhones ... its amazing --- I don't have to miss church ... was a blessing. So let me invite you to church this week .... here in the link 
I need to take a moment to update you on children and families that I have asked you to pray about. I woke this morning to a message from the Thayer Family.
CURED so that our lives mission is the obligation to help the children affected by these catastrophic diseases. 
Since his counts were up this week, we were able to attend church at Brightmoor. It was about the power of an invite and our pastor asked if he could use our story in his service. Our son Christian went to school with 2 amazing little boys and they became best friends. Through them I met their mother Cheryl Helm. Cheryl had Christian for a sleepover and asked if she could take him to church, I ended up coming with her that day. Little did I know that that invite would eventually lead to me inviting my brother and Nick. We all were getting our priorities straight and letting God heal us. Then my Dad started attending Brightmoor also. Soon others came and my little brother met his now wife there also .... all from one invite. Sadly, Cherly had became very sick in 2007 with cancer and she was one of the best moms I have ever known. She was hands on and her sons were her whole world. When she became sick I promised to pick her boys up for swim lessons or soccer. I knew she was really ill when she bought me car seats, if you knew her you knew she never wanted anyone to drive her children but her. My heart broke, I remember I started video taping everything the boys did so that when they went home I would leave a dvd for Cheryl for her to watch them and see them since she was too weak to come. I knew how much that hurt her missing out on those moments so I tried to bring them to her. For as long as I live, I will never forget bringing the boys home one day from a play date to her. She was weak and so very fragile and she walked out to her garage to let me bring the boys in. Bryce was asleep in my arms when I carried him into her house and she stopped m
e and said, "I don't know what I am going to do if something happens to me.... My mom is too weak, she's older now and my sister is just getting married and couldn't handle it .... I wouldn't let her she said. She looked at me as if I should have an answer to her so deseperate question that her heart planted in mine. A phone rang and stopped us from talking but I vividly remember this day and can replay it as if she was asking me to help her. 
With a heavy heart I post today ... another child from our St Jude family got her angle wings back way too early, Saturday Mar 19. For those of you whom know how St Jude operates, it segregates the hospital clinics and wings into categories. A clinic is Luekemia, D clinic solid tumor and E clinic is Neuro Clinic. The 2nd floor where we all go inpatient, one wing hosts all A clinic and the 2nd wing hosts all D and E clinic children. We met Kya went we first arrived to St Jude. Regardless of the way we somehow all segregate through diagnoses, we will all lived in the same community and would pass each other a few times a week, sometimes on the 2nd floor you would pass each other with hands filled with extra clothes and carryout from anything you could grap fast in downtown Memphis. We know each others stories, we catch each other crying and we whispered prayers when we walk away from each other knowing the possibilities that come with cancer. We are indescribably part of a family that no one wishes they ever had to be part of, but a family nonetheless, of parents that have had to watch on the side lines holding their children tightly ... watch them fight cancer. There is a bond among us that only we can relate to. There are no words that will adequately describe this common bond, but no words are necessary to describe it among us. Whether you are close to each family or not, you mourn for them and the prayer in your heart that you wished so much for them to be healed and go home free of the grip of cancer. Kya was precious, petite and always smiling. She will be missed. We also shared in the news of yet another child named Belle from our protocol that just relapsed and is scheduled for surgery next week. Please pray for her, pray for Haley and Ehrren too whom all relapsed on the SJYC07 protocol in the last month. (you can find their stories under protocol friends, in the friends we follow button above)
Sorry for the delay, I know some of you were waiting to hear about Friday's procedure. Everything went just fine. For those of you whom don't know what I am talking about Baby Nicholas had tubes placed in his ears at Huron Valley Hospital Friday Morning, (The 11th) due to chronic negative pressure in his ears for months now. We were about 2 hours delayed due to labs the day before not being processed properly. He woke up fine, just a little loopy. This was his 8th surgical procedure and he's just 17 months old. Pretty crazy ... it's his 52nd time being sedatedin less than 9 months - Can you imagine that?
We had our weekly labs re-drawn at the hospital on Friday. His ANC 910 and his platelets at 146 and hgb 10.8 everything is going up as it should. This chemo he is on (erlotnib) is just not fun. It upsets his tummy, though he's eating great and he is fussy on this and restless when sleeping, overall we just do not like this drug! 
The St Jude Kick-a-Thon was yesterday (the 12th) and Christian and Nick both finished the 1000 kicks for Jude. I am so proud of our 9 year old that he not only finished, but also raised the most money. (Thanks to our amazing friends, whom have repeatedly stepped up when we have asked, we are so very grateful) We raised $850.00 of the $2500.00 plus that was made from this event! Go Christian!
Please pray for Japan, I have been glued to the TV watching a country be ravaged and it's so painful to see the video of the waves sweeping everything up in sight .... remember we are not safe from anything and no one but God knows what tomorrow will bring ... pray for the people, for all the souls lost, for the children, that aid will come in time with water, food and shelter.
Ok .... so we had a great week off from chemo! Baby Nicholas' appetite comes back and he eats great without chemo. We look forward to the next 3 cycles being done so he can keep that appetite. So we had our trip to Beaumont - The Rose Cancer Center for his monthly pentamidine and labs. We are bummed to report of his week off when his counts should have recovered somewhat, his remained at ANC 600. His platelets 175 so they came up and his Hgb (red blood) 10.3 that also came up. We think he is still fighting that cold he caught to a certain degree and on top of that our home is
Our Doctor, Dr. Wright is just amazing ... but she is the easiest person to read. See I have seen her face in the moments before someone is delivered the worst news possible and she is such a great woman that she can't hide those markers I have seen in a certian walk and expression and its almost hard to look at her because I know without a doubt we could read her - no words would need to be spoken. She isn't the type of doctor that sees our children as a case but as a spirit that the family can not bare to hear anything negative about. She is compassionate and kind and soft spoken, but she is also direct and honest. She carries all the character you would hope a doctor would under these intense circumstances. We truly respect her and feel so blessed she is our primary at St Jude. We started with Dr. Gaijar and are thankful he gave us to her.... she is no doubt one of the best parts of St Jude for us.
So Wednesday we started in triage with labs and check up. His ANC 600 and platelets 104 and Hgb (red Blood) 9.3 so all is fine and only 3 days left on this chemo before he has a week off. We had clearance visits and then off to the ABR (hearing test) Everything is stable ... another great sign.... PT eval was cancelled because he was sedated. I couldn't sleep at all knowing the scan was hours away. So Thursday (today) was MRI day .. LP day ... and well ... as you know --- I started with those results first. (smile) We met more families and some that really need prayers, Reese Coffin .... please pray for her ... Carrisa ( we met her living here but please pray for her) ...little Miss Bree ... Luca, Ashlan, Kylie, Nathan and Haley. Also for Ivey and Ehrren both at Le Bonhuer Hospital healing from surgery. Please keep praying for all the children here at St Jude and for Christian S. Scans next week.