My heart is breaking......my little man defeated the odds time and time again.......and fought this evil called Cancer with a smile on his face. But, he finally grew just a little too weary and went home to glory yesterday, September 26th at about 9:30 pm. We read him a book called "I wonder what you do on your first day in Heaven" and personalized it according to him as I read. Then the rest of his family, his grandparents and uncle from up north rushed in to touch him and love on him. Moments later he took his last breathe........ Christian's whole team of medical staff continually said Christian had something special and that his smile was infectious. One of our fav pain doctors said no matter how hard the obstacle Christian was up against -he always "leaned towards happy"...what a great compliment to hear as a parent. Often a new doctor would come on for the week and shake his head at the wonderment of what Christian was capable of doing.....because according to what he looked like on " paper" as a result of scans and numerous tests, he shouldn't be doing much of anything. Those things consisted of twisting and turning sideways in bed, riding full speed ahead in a wheelchair giggling, imitating every animal sound to perfection, eating more then any kid on the floor( they were especially amazed when he managed to put away almost half a three way on Monday night)......going to physical therapy and swinging on their swing....not to mention being able to take a trip to the aquarium! Another fav doctor from his team remarked "Remind me again why we are treating this kid!:) " if you Even in PICU, he managed to strum the guitar and shake his little shaker when Katherine from music therapy came in....he wanted to watch Peppa Pig and hold his little figurines in his hands when we was laboriously breathing. The last "real" words he said before needing medication to sedate him and keep him from being so anxious as his heart rate continued to esculate were: eat, this( he wanted a drink and pointed,) happy( Yo Gabba Gabba was on) and No ( with some enthusiasm) when his Uncle Derek and Daddy kept trying to cover him up. At one point when I though he was sleeping, I started singing our song "you are my sunshine" and Christian started humming and "singing" along with me.....his dad and I were both incredulous....and I kept singing and with such clarity, he looked at me and ran his fingers through my hair which he loved to do often. I could barely move and then he fell back asleep again. :( If you could have seen the size of the tumor and the wound that encompassed his whole bottom, as well as the things it did to his insides...Christian would be your hero too. I love that baby with my entire being - he was my whole life and now I have to make sure his purpose shines on. Pediatric cancer has to be stopped. I want to thank you all for praying for Christian and loving and supporting us all...his grandparents, his uncles and aunts, and cousins: both honorary and family, as well as his friends who took such good care of him. Thank you for helping with his medical expenses. But now, we are faded with planning and paying for a funeral that we had hope would never happen. We truly thought God was going to heal him differently then He did.....but we are still grateful for his complete healing in Heaven. Please pray for us and if you can contribute to Christian's funeral expenses in any way, we would much appreciate it.....
I just want to take a minute to remind you not to take your day for granted. Rejoice in it, in fact. Because wether you are a " believer" as I am or not, there is no promise of that tomorrow. Christian and I checked into Children's Hospital for what was supposed to be a five day stay, and now we have been here over forty.....I know I'm a good mom and I love that baby more then my own life but I took time for granted and put off doing things with him that I wanted to do for SUCH insignificant and sometimes selfish reasons. I thought we had all the time in the world to take that trip to the beach, go to the zoo or the aquarium or even take him to see friends who had yet to meet him....little did I know that our summer would be spent confined between these white sterile walls. I'm so thankful for our social worker Wanda and the people at Chidlren's and The Dragonfly Foundation for helping to make at least one of those wishes for my baby boy happen recently. I've only left the hospital on my own four times and I haven't slept in my own bed in over a month. Our whole summer has been spent here between our last 28 stay and this....so please be thankful for the sunshine and being able to hear the birds sing or even the traffic race by you. By thankful for laying in your own bed even when you can't sleep. Don't complain if you feel a little tired or overworked. And for the love of God, let the little things so...especially your grievances with others...life is prescious and not worth the wasted energy that it takes to get upset over someone that really doesn't mean anything. Hug your baby, pick them up for the 100th time, let them have that extra treat, take them to the zoo even if you think it will be too crowded, read them one more book, and yes, buy that toy that they really don't need. Hold them a little closer. Call someone you miss or apologize to someone you wronged and say you are sorry. Embrace everything that comes your way and be thankful.... And so it in honor of Christian, my little pint sized pioneer who fight for his life everyday and whose every small smile is worth my bucket of tears. We love and appreciate all of you who pray for Christian. Please keep praying that we get to once again " rejoice in the day that The Lord hath made" outside the hospital ....please pray that sooner versus later we take Christian home with us for good and that this cancer is gone forever. Once again: " I love Christian. And, I HATE CANCER!"
I have been overwhelmed with responses on where people can purchase the " I love Christian. I hate cancer" T-shirts and bracelets. You can go to nevusspecialspots.bigcartel.com to help us raise awareness and research for melanoma and pediatric cancer. Less then 1% of all cancer funding goes towards pediatric cancer. Christian has been tolerating his new chemo better then expected and his pain has been managed to the point that he has been able to get out of bed and with the proper padding and equipment take a wagon ride or two. The wound remains the same :( although it's not getting any worse either. We still have a long way to go there. But, his overall swelling has went down considerably. His spirits are high again. Today has been an off day though. He has been irritable and frustrated and not his usual smiley self. I think he sometimes feels SO over" this always having to bed thing" . It's truly no place for a toddler....of course, neither is a hospital..... Please keep praying for continued healing.
Christian is having his infusion of the new chemo right now. Keep him in your thought and prayers. The side effects are potentially deadly but it's our hope and prayer that it will help him far more then it can hurt him. We hope that this can be the miracle Christian needs!
Christian has been feeling much better the last couple days. He has started smiling again and even belly laughed a time or two. After too many days of almost unbearable pain, the doctors placed an epideral early last week. However, the staff didn't think we were going to return from ICU. Christian proved them wrong. This has gotten rid of about 90% of the pain, but he is comfined to his bed. Anyone who knows Christian knows how challenging this has been to his mind and his little active spirit. We are working hard to distract him from the pain of teething too and the consistent itching from the meds. He is VERY weak and is often frustrated with this whole thing and I can't blame him. But time and time again, Christian rallies. I'm so proud of him. Tomorrow, he begins the second round of new treatment. The doctors have warned us that the chemo could possibly hurt him more before it help him....it just depends. Christian could even bleed out from the large wound the tumor caused. They aren't sure how much of what's going on with the baby boy stems from just the tumor versus chemo. Again, that's because this is adult chemo and there is no data on how a baby this size is going to respond. :( please pray that this chemo is exactly what Christian needs to survive and BEAT this stupid Cancer. Also, pray it doesn't hurt him anymore then he is already suffering. He can't take much more. Thank you! I'm Christan's mommy and I HATE CANCER!
Christian had a pretty rough night. He was waking up about every two hours. The pain management team came in this morning and reassessed how to better manage his nights and days. The tumor has grown considerably and has made it impossible for Christian to sit down. His coordination and balance are off as a result of the recent growth too and the tumor is pressing into areas that are interfering with some essential bodily functions. However, so far, he hasn't had a fever or thrown up or broke out in any bad rashes. Please pray that he feels more like his chipper self and that this chemo starts working FAST! Christian needs this miracle.....and so do we.
Christian had a CT scan, echocardiogram, and EKG on Friday. Although his heart and lungs are doing fine (one of the most common side effects from his chemo was heart issues), there were a couple unusual things that showed up on the CT scan. Without going into detail, it's a little concerning....add that to the fact that Christian's tumor has gotten even bigger in the last couple days, they feel the best place to monitor him is back HERE at Children's. He qualified for his new treatment and it should arrive on Monday. It's a relatively new drug that's never been tested on a baby before.....only adults. The side effects can be VERY severe....even dangerous but we feel it's worth the risk to try and beat this thing before it beats Christian! (The treatment could actually cause the tumor to flair up before it gets better.)We are still praying for our miracle through all of this and know God works through doctors and science too! Please pray with us...
I updated Christian's bio on this site if you want to know the complete journey to this point.
But, here is the latest update on Christian's most recent diagnosis: malignant melanoma.
His first brush with this terrible disease occurred when the doctors removed a tumor the size of a large mandarin orange out a very sensitive area in his nevus. One of the largest melanomas that our oncologist had ever encountered. They were unable to get the margin and the cancer returned one month later, This time the tumor grew into areas, that for the grace of God, should be prohibiting him from some normal bodily functions.
It's very aggressive. It didn't even respond to the original chemo administered ( interferon), it just kept growing. So they admitted Christian to Children's and tired another. This had great results that were completely reversed when a second combo drug was added. However, after just the first chemo was administered again, the tumor began responding at a rapid rate- shrinking considerably! We were overjoyed. And after - 26 day stay at the hospital we were released.
However, we knew even before receiving the results from Christian's most recent MRI( this past Friday), the Cancer had rallied again and the tumor is now LARGER ( in every way) then it was during his stay and is threatening to harm our precious boy again. He is already experiences some discomfort from the drastic changes that occurred in a matter of a week. We go TODAY to discuss what we are going to do next to fight this terrible disease! Please pray hard that our answer is right around the corner and that this brave little boy will win this battle! Thank you!!!!
Today is Rare Disease Day which is an advocacy day to bring awareness and recognition to all rare diseases and conditions. I am posting this in honor of my sweet, brave, baby boy Christian James....Only 1 in 500,00 babies are affected by Giant Congenital Melanocytic Nevus....and an even fewer percentage of them develop melanoma in the process. In more ways then one, I love some one who is rare! :) I am blessed that God chose me for him.....hopefully, by getting the word out, it will help further research not just for Christian's condition ( CMN) but for all born into the world with something we don't yet understand.
Christian sporting his scars and spots!
So, a few people have asked me to update this so they could be reminded of the link to continue helping Christian's journey. The benefit was fun but VERY cold. We were so grateful to all who participated and who attended. We felt the love because you had to really care about Christian to have braved that kind of weather. We think it would have been more successful if people would have been able to be outside and see more of what we had to offer and benefit from out free ( and cool) activities. The next one will be held in warm weather. Christian had his expanders removed on the 6th and it was a long surgery. He did well and they were actually to remove some nevus on his leg too. BONUS!!! He ripped the stitches open in several spots over the next couple weeks and it has caused some delay in healing but he is doing really well. They were able to get a lot and no sign of the melanoma returning. Praise The Lord! With your help, we have been able to take care of a lot of the expenses connected to Christian's surgeries and expenses. But we are still short of our goal and there is more to come. Please keep Christian in your prayers as his next surgery date is March 21. Thank you, again, for any help, encouragement and prayers.
Thanks so much for your support and prayers so far. We hope you can make it to Christian's Special Spots Benefit this Saturday, November 23, 2013. Lindner Park, Cypress Way, Norwood Ohio 45212. It may be cold for this indoor/outdoor event but please, don't let that stop you. Dress warmly and enjoy the bonfire and hot drinks and hot soup & chili! Fun activities and lots of cool things to win and to purchase! God bless. Christian and I will see you there! :)
Our little trouper is now officially 9 months old!!! Happy 9 months, Baby! The last couple days have been hard. His most recent fill made him very uncomfortable and sleep near impossible. But its never long before he returns to his smiling self again. God has blessed him with such a easy going, accepting disposition. I often wonder if we, as adults, could handle what Christian is going through the way HE does.....OH! And, don't forget! Christian's Special Spots Benefit is this Saturday (Nov. 23) at Lindner Park from 3-7. Dress warmly! Love and blessings to you all!
Christian's 10th fill....
I can hardly believe it- Christian had his sixth fill today...once again he was a little trouper. Thank God for Yo Gabba Gabba the " Nature" episode for keeping him calm and still. Fill days make me very emotional... The magnitude of what's ahead hits me in the face every time. And though it doesn't hurt him at the time, my heart aches as much as my stomach from the moment I get out the numbing cream and the Saran Wrap to keep it moist on his skin. I wish that I could bear these spots, and take every future scar for him. I would gladly do it to spare him I any pain. Makes me appreciate once again the sacrifice our Lord made for us....please pray for my little boy today...
Christian had his first saline fill in both his back expanders today. 30 ccs in one & 35 ccs in the other. A nice start on expanding the good skin to eventually replace the bad. He was a real trouper and calm through the whole thing. A special shout out to Brenda Wiles who helped with this today....pray that the expanders stay infection free. :)
The expanders after the fill
We just got word that Christian's first "saline fill" for his skin expanders will be on October 7th in the a.m. Please pray it goes smoothly....
Thank you so much for donating.....Christian appreciates the support. The little guy is a trouper and I'm blessed that so many people are cheering him on. I appreciate you sharing /following this link as much as possible too. :) God Bless.
Christian is back to his old self again....Smiling and laughing and doing MUCH of his favorite thing: Eating! LOL We are waiting for the hospital to call back with the date for his first "saline fill".....Thank you all again for your generosity. I am overwhelmed with the love and support.....God bless you guys.
The little guy is pretty much 100% again after surgery last Fridays. He will get his first saline fill next week....keep praying this all continues to go smoothly. Thanks again for continuing to help!
Christian got his leg stitches out today
Thank you so much! We appreciate your generosity and support! Keep those prayers coming! We know this is for the best but the reality of what he still has to go through hits hard every time I look at him or feel these things when I hold him......
The incisions and where his ports sit...
Just an update-Christian's expanders are settling in well and he FINALLY doesn't seem to be extremely uncomfortable all the time. He still wakes up in the night in a little bit of pain but now we are giving him ibuprofen alternating with Tylenol. The incisions are healing up well on his back as well. The incisions where they removed a few bothersome nodules. Please continue to remember him and our family in prayer.....
*****Christian lost his fight to malignant melanoma at the age of 19 months,yesterday, September 26th at approximately 9:30 pm. But, he won his place in glory. I know all of Heaven smiled when they saw his sweet, little face. Please see the link below if you can help us with the expenses of a funeral we truly hoped we would never have to plan!!!! We are so overwhelmed. Also, pray for is as our hearts break and arms ache in the absence of him here on earth. Pray we can get these things arranged and honor his bright but brief life in a way out precious angel deserves.
If you want to help us fight melanoma and pediatric cancer- please go to http://nevusspecialspots.bigcartel.com and buy your tshirt or bracelet today.
Christian was born on February 18, 2013 with a rare condition called Congenital Melanocytic Nevus (CMN). Congenital means "present at birth", melanocytic means "pigmented", nevus means "birthmark or mole". This is a fairly unknown birth defect.
1 in 20,000 babies are born with a nevus.
1 in 500,000 babies are born with a giant nevus.
Christian has a GIANT nevus known as a "bathing trunk" which covers the lower half of his body and gives the appearance of a pair of shorts. Christian also has hundreds of spots in various shapes and sizes all over his body.
His bathing trunk is dry, sensitive, textured and prone to tearing and infection. It produces bulbous nodules that ulcerate, can cause him pain and are potentially life threatening. 002% of babies born worldwide have the type of nevus Christian has.....
By the time Christian was three months old he had already had three surgeries which included biopsies and the removal of 12 benign but troublesome tumors. One tumor was considered a melanoma and the surrounding lymph nodes were removed as well.
The plan for Christian was to remove the nevus in its entirety. This involves stretching his good skin to the point that the nevus skin can be removed and replaced by the "created" skin.
Christian had two expanders, each connected to a port,implanted just below his shoulder blades on September 13, 2013. He received saline injections three times a week for 8-10 weeks that stretched the good skin creating rather large, grapefruit sized bubbles on his back. December 6th they removed the saline-filled expanders and performed total reconstructive surgery of his back. They were also able to nip and tuck some excess skin on one side and remove some nevus on one leg. Christian had over 250 stitches. Due to being a rather active baby, he pulled them apart in several spots as he recovered. But, that didn't stop this little guy from smiling.
His next surgery was then scheduled for March 21. And, we had a couple glorious months of just follow up appointments when the unthinkable happened. I found a LUMP in a sensitive area of his nevus. Abnormal growths are 'normal' for a child with a nevus so I wasn't too worried at first. But, it was very HARD and an INTERNAL nodule. Our plastic surgeon scheduled us for a biopsy and said he would just remove it. However, when he operated he found that the tumor was larger then expected and deeper. He could NOT remove it. He recommended Christian have an MRI and PET scan after he sent the biopsy off.
It took far too long for this to happen. Almost three weeks from the date of the biopsy before there was an MRI and another week for the PET scan. The tumor was found to be the size of a chicken nugget and was sitting on some vital internal organs and appeared to be growing into essential nerve ending and vital blood vessel. It tested positive for MALIGNANT MELANOMA. It needed to be removed. We were sent to speak with a urologists to discuss the findings and the danger involved with the rumoval of this tumor that was deemed to be the size of a chicken nugget. We were heartbroken by some of the information but laid it in the hands of The Lord. It took TWO MORE WEEKS to schedule the surgery that required the availability of four different types of surgeons. During that time, the tumor tripled in size. By the time it was extracted, it was the size of a large manadrin orange!!!!!! They were able to get the whole things but it was NOT possible to get the margin required for such a large tumor.
It was a very hard recover for Christian. Christian spent a week in the hospital( and Mommmy with him) Christian's incision was 8 inches long and over a hundred stiches. Afterwards, he came down with the croup and was sick again for two weeks. One week later, he started chemo.
There are NO MEDICINES designed to treat malignant melanoma in a baby- or a child for that matter. It's extremely rare. In fact, he is one in about a million. The chemo Christian began ( and is on now) had to be measured and modified severely just for him. It's not been tried before....he is a true pioneer and brave little warrior.
And melanoma is one of the most dangerous forms of cancer. It's not "just skin cancer" when you are talking about the largest organ of your body. It can affect anywhere and anything in or on your body......
Two weeks after Christian began treatment, I found another lump in the same vicinity. All Christian's doctors thought it could be scar tissue or inflammation from his recent surgery. But, I knew differently.....it was another tumor. Christian had another treatment with the awareness that it was there- thinking that that it would help. However, one week later, it was even larger and firmer. The cancer didn't even blink an eye at the chemo.it was very disheartening. By the time we returned to clinic Christian could not sit down he was in so much pain.
If fact, we were an emergency admit that day we came to the hospital for our appointment an WE DIDNT LEAVE FOR 26 DAYS. He was scheduled for an MRI that next night and surgery to see " what was going on in there, and get further biopsies. But, we knew it was the cancer returning with a vengeance. ( in fact, Christian has THREE masses that formed one large one. And, it's INOPERABLE)
New and potentially dangerous chemo was introduced but the cancer was being so aggressive and growing at such a rapid pace it was literally threatening his life before our eyes. It was very difficult getting Christian to take these treatments. He experienced MANY complications with the chemo cocktail. In fact, two weeks in, the second drug, caused his temperature to skyrocket, his counts to go crazy, and he was in incredible pain to name just a few.....His whole team was worried we might lose this precious little boy to this terrible disease. But after removing the second drug, the first drug began having a miraculous effect on his tumor. Two weeks later, Christian was released. We think God for not leaving Christian as he " walked through valley of the shadow of death" . Our Heavenly Father has been a source of comfort and peace as we have travelled this difficult road.
Christian currently has chemo everyday with homecare coming to us. He has blood work twice a week and we are hoping and praying he will win this war against cancer! God has blessed Christian with an incredibly patient and resilient, happy spirit. I couldn't make it through all of this if Christian's attitude wasn't the way it was. He almost always has a little smile on his face.
You all helped us raise over $4800.00 last year/early this year and that helped considerably with all the expenses associated with the complications and surgery associated with Christian's congenital condition and we are eternally grateful for that!!!
But the fight is on!!! And, while I am fortunate to finally have some coverage at this point, expenses for 'denied' necessary procedures, lost wages, and unknown future treatment ( most of Christian's treatment are cutting edge and not necessarily 'approved') needs and overall care have been and will continue to be significant! Friends, family, and strangers have already been generous with their time, money and support- wether it came from a card, a gift or a picture to cheer Christian on....Our point is not to actively solicit, but MANY have asked how they could help in some way, so please know that any contributions will be used to support our sweet, baby Christian in some way. God Bless!
Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.