Baby H
For the privacy of the family I will not be mentioning any names. This beautiful family has three children. They were completely shocked and in a bit of denial when they found out they were pregnant with their fourth child. From the beginning, she felt like something just wasn’t right. You know, that mommy instinct. Fast forward to the infamous 20 week ultrasound. Baby #4, AKA “Little Hero” has Cornelia De Lange Syndrome along with a large diaphragmatic hernia and abnormal heart/lung development. The testing all came back “abnormal” and “not compatible with life”. She was not expected to go past 28 weeks. 

Tueday, January 13th 1:47am. My phone rings and it’s a call from the amazing nurses at St. Als. Labor & Delivery. They have an angel baby that needs photographed with his parents.

Baby H was stillborn at 28 weeks.  These sessions are never easy, but I am so thankful that I got the call to create these memories for this heartbroken family.  

This is the only photo I have permission to show, but I think it says everything. It reminds us that every day is a blessing. It reminds us that anything can happen at any time. It reminds us to love…

Camryn was just 14 when she had her first Raynaud’s attack. It was a little frightening for her, but did not last more than a few hours. One year later, Camryn had a Raynaud’s attack that was very aggressive and involved her hands, feet, arms and face that lasted almost a week. Along with turning as blue as an Avatar (her words), she felt stiff, tired, and had a hard time lifting her arms. For most families, this likely would have been chalked up to a bad episode of Raynaud’s and forgotten. But Camryn’s mom Tanya, is in the medical field, and wanted more info. So, lab work was drawn, setting off a series of various tests and trips to Seattle, where Camryn was ultimately diagnosed with Systemic Scleroderma.

After the initial shock, Camryn’s family began to research this devastating disease. They’ve since learned there are Scleroderma clinics and doctors that specialize in this disease, and there is exciting news that Stem Cell Transplant is being done on Adult Scleroderma patients with almost complete reversal. Unfortunately, none of these doctors or clinics are anywhere near Boise, ID. For now, Camryn has been started on a treatment of medications including a low-dose chemotherapy agent called methotrexate. It is not certain what future treatments will be needed for Camryn, but her family is dedicated to seeking the course that is best for her.

From the family: “Camryn is the kindest soul with a contagious laugh. She is handling this as she handles every bump in the road, with quiet courage. She is our shining star. Even if a donation isn’t possible, please keep Camryn in your thoughts and prayers as we face this challenge in our family”.

About Systemic Scleroderma: An autoimmune disorder that affects the skin and internal organs. Autoimmune disorders occur when the immune system malfunctions and attacks the body’s own tissues and organs. The word “scleroderma” means hard skin in Greek, and the condition is characterized by the buildup of scar tissue (fibrosis) in the skin and other organs. The signs and symptoms of Systemic Scleroderma usually begin with episodes of Raynaud phenomenon, which can occur weeks to years before fibrosis. In Raynaud phenomenon, the fingers and toes of affected individuals turn white or blue in response to cold temperature or other stresses. This effect occurs because of problems with the small vessels that carry blood to the extremities.

I want to start off by pointing out how amazing this family is! So much love and kindness in all of their hearts. I have enjoyed every minute I have been able to spend with them. We had a wonderful time by the river in October. The night was perfect…Please read “Kevin’s Story”. Please pray for this family.

Written by his wife:

Kevin was the youngest person to be diagnosed with Multiple Myeloma cancer in February of 2002. He was 28 years of age. Kevin was given 6-8 months to live and a maximum of 2-3 years with some treatment. Kevin was devastated when he was diagnosed. He moved up to North Central Idaho to get on disability and live out the last of his days with his Dad & Step-Mom by his side. Over 12 years later, Kevin is still fighting.

Kevin did a lot of the chemo options that were available to him for treatment. Multiple Myeloma is a cancer that affects the plasma cells, a kind of white blood cell found in the soft insides of the bone, called marrow. It is a tricky cancer that finds its way around most all chemotherapy treatments. Because of this, Kevin has unfortunately exhausted most of the avenues of treatment and, has been placed on Hospice Treatment to help keep Kevin comfortable.

Kevin & I have been together for almost eight years and he has stepped up and been the most amazing Dad to our daughter, Miaja (15). We have been through a lifetime in that short amount of time and we wouldn’t trade a moment of it.

In 2011, Kevin’s cancer progressed and caused his L2 Vertebrae to become deformed and collapsed. Kevin was going to need surgery to try to save his ability to walk or even be alive. However, according to HIPPA Law, the Drs and Nurses wouldn’t discuss anything with me. So, with the help of Kevin’s sister, we set up a wedding in the chapel there at St. Luke’s Regional Medical Center, Boise, and in 24 hours, we were married in front of a J.P. and some select family members.

The surgery took 10 hours and had to be stopped to revive Kevin 3 times. There was less than a 50% chance that Kevin would be able to walk, let alone, be alive. After the 10 hours of surgery, 2 rods running up his spine and 21 screws holding everything together, Kevin came out and after a month in the hospital from the day that he was first admitted to the day he walked out of rehab was only 30 days!

Stronger than ever, Kevin fought his way with more aquatic rehab and acupuncture, and was able to function almost as good as before the fracture.

In August of 2012, Kevin adopted Miaja as his own daughter, closing the family circle. Even though he had already treated her like a daughter and considered her as his own. This just made it official for everyone.

In late 2012, Kevin had a set back with a vehicular accident that did some irreparable damage to his lower back and his hardware.

In 2013, just before Christmas, Kevin got pneumonia. This, for a cancer patient is one of the worst things that could happen. While admitted to the hospital a couple days before Christmas, Kevin coughed and fractured a rib on the right side of his body. Unbeknownst to us, a football sized hematoma started to form, cutting off the oxygen to the right side lung, while the pneumonia was causing him difficulty in breathing from the left lung. It made for a very scary Christmas. We were thankful that we found a surgeon willing to take this on. Kevin went in to surgery to drain the hematoma and hopefully get over the pneumonia.

The recovery was extremely painful for Kevin. On New Year’s Day Kevin was able to come home with Hospice care assisting him at home. Kevin is currently under the care of St. Luke’s Hospice Care Team. They have been a blessing to have at all hours of the day and night and to have just a phone call away.

This was one of the hardest newborns I have ever done! She was full term, she was perfect! I held her, loved her, and talked to her. No one will ever know why she was taken so soon, but she is now in her mommy’s arms in heaven.

 

Zeke was born full term when he turned 7 month old he ended up with the rotavirus and he began getting really sick. After months of not having an interest in eating, he was diagnosed with failure to thrive and was given a tube. He then struggled to gain weight so they gave him a central line for about a year and was diagnosed with asthma and reflux after trying every possible medication. He would still vomit every feeding so they gave him a fundoplication surgery. He has arthritis, severe sinus disease, and a chromosone issue. They think he’s having possible silent seizures. He stops breathing in his sleep. His stomach is very delayed and doesn’t empty. He haf a gastric pacemaker put in. He has had many hospital stays, over a million lab draws, over 50 surgeries, and he was diagnosed with growth hormone deficiency and recieves injections every night. He sees specialist after specialist and there is no main diagnosis yet. His Facebook page is called Mighty Man Zeke.
He is 7 and still on a g-tube. He is still struggling with weight gain. He looks healthy on the outside, but the inside of his body is very sick.

Hannah Rose McDade was born September 7, 2004. She went to heaven July 11, 2014 after losing her battle to brain cancer. Hannah’s final days were spent making lasting memories with her family.

Hannah’s vibrant smile brought joy to our lives, her strength gave us hope for a better tomorrow and her gentle soul reminded us just how precious life really is. Hannah was wise beyond her years and she lived her life to the fullest.

Meet Ellie. Ellie lived 46 short days but made a huge impact on many. 
~To my dearest family, some things I’d like to say. But first of all, to let you know, that I arrived okay. I’m writing this from heaven. Here I dwell with God above. Here, there’s no more tears of sadness; Here is just eternal love. Please do not be unhappy just because I’m out of sight. Remember that I am with you every morning, noon and night. That day I had to leave you when my life on earth was through. God picked me up and hugged me and He said, “I welcome you.”