*****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.