Finding Hope & Strength: Morgan’s Story

bjarnoThere are two things on earth that every sick person wishes for – hope and strength: Hope for a day when your pain is zero, and strength when you feel like that day will never come; hope for the day your life will return to normal, and strength for those who will never be able to experience “normal” again.

For a cancer survivor like myself, I found the hope and strength I needed during my cancer journey at Connecticut Children’s Medical Center.

On April 12, 2013, at the age of 15, I was diagnosed with Acute Lymphoblastic Leukemia (ALL), a fast-growing type of blood cancer in which the bone marrow produces too many immature white blood cells called lymphoblasts. Up until that point, I was living the life of an average teenager; I was active in sports and focused on my schoolwork. I was a few months away from completing my sophomore year in high school and I knew that I had a critical and exciting year ahead of me my junior year.

I had started running on the track team about a month earlier and had been experiencing some pain in my back and chest. The pain would come and go; so at the time, we assumed it was due to sore muscles and my body getting used to running more than I had in the past. However, one night the pain in my back and chest got increasingly worse, so we knew something was terribly wrong. We just never imagined that the diagnosis would be leukemia, or that the trip to the Emergency Department at Connecticut Children’s would roll right into a prolonged hospital stay, surgery three days later to place a port in my chest, and chemotherapy running through my body by Day 4.

bjarno_photo 2In the midst of all the concerns that we had in the first couple of days after my diagnosis, we were able to put one critical decision behind us – where I would get the best possible treatment. We knew through the guidance the doctors provided to us that staying at Connecticut Children’s Medical Center was the right decision. It was so incredibly reassuring to my parents and to me as well when my doctors explained the clinical trials taking place at Connecticut Children’s. Right here and so close to home, we could get the best care available as well as access to the most innovative cancer treatments.

At 18, I am happy to report that I started my freshmen year at Providence College last fall, just weeks after finishing my last treatment.

The last two-plus years of my life have certainly been full of many ups and downs. However, despite my diagnosis and the impact that treatment and many long hospital stays had on my life as a teenager, I have emerged from this experience with my eyes and heart wide open to fully understand the value of a helping hand.

Blood Donations are Key to Daniela’s Success

11831770_952000898171489_6294697566301052538_nDaniela Ciriello’s start in this world wasn’t an easy one. Daniela lost her twin sister in the womb and had a tough start in life, suffering from what her parents first thought was colic and abdominal problems. Little did they know things would only get worse for their little girl before they got better.

“I remember Daniela always being fussy from day one,” said Dan Ciriello of Southington. “We mistakenly believed it to be GI related. She was on a ton of different medicines to battle constipation and eating issues.”

But what appeared to be a GI issue, was actually something much different. Daniela had a life threatening condition that was caught in the nick of time.

“We ended up at Connecticut Children’s through a referral by our birth-to-three consultant. Our pediatrician completely missed the symptoms and diagnosis,” said Ciriello. “Daniela was seen by Dr. Sayej who was so compassionate and caring. He requested a full blood panel on Daniela and several other tests. That same night we got a call telling us to take Daniela to the Emergency Department immediately! The doctors couldn’t even believe she was conscious because we found out her hemoglobin was so low.”

“She was close to heart failure and we didn’t even know it. Her spleen and liver were completely swollen and enlarged. If not for Dr. Sayej’s thoroughness we may have lost Daniela that night,” recalled Ciriello.
12191810_994086583962920_5336121628537512062_n“I will never forget the day Daniela showed up in my exam room. When I first saw her she looked ill. Her parents were rightfully anxious and concerned about their daughter,” said Wael Sayej, MD, Gastroenterologist at Connecticut Children’s. “When I got her blood results back that night I became even more worried. I knew we needed to be aggressive with the management of her illness.”

Turns out, Daniela was born with a chronic and deadly blood disease called Beta Thalassemia Intermedia. Although the condition is manageable, it is life changing and will require numerous doctors’ visits, blood transfusions and therapies throughout her life. “It obviously hurts and scares us all, but it also brings everyone closer. She’s at Connecticut Children’s several times a week, so it really affects out schedules, time and finances, but the entire staff has been amazing,” Ciriello said.

Currently, Daniela receives blood transfusions every 3 weeks and will likely need a splendectomy by age 6. Even so, she handles every procedure like a trooper and is feeling so much better these days. “It’s like we have a new kid. She’s gained weight and is walking and talking and eating like she should have been all along,” said Ciriello. “She has basically caught back up to other kids her age even though she has this condition.”

“Even though Dr. Michael Isakoff is Daniela’s physician, I have continued to follow her case and have worked with dietitians to increase Daniela’s caloric intake to help her gain weight,” said Dr. Sayej. “She has done very well since her diagnosis and her weight is now normal for her age and size.”

“The bottom line is when a child does not look well, we have to trust our clinical judgment and trust parental instincts,” Dr. Sayej continued. “Doing the most basic test led to getting Daniela the proper care she needed. I try to treat every child that I see as my own.”11873790_961056887265890_253535072735214412_n

The Ciriello’s recently created “Daniela’s Dream for a Cure,” a nonprofit foundation to raise awareness and funds for her treatments.Not only that, they are also Blood Drive Coordinators and have held many successful blood drives since September 2013.

“Blood donors are truly heroes and save lives, like Daniela’s,” concludes Ciriello. “We will do anything to get more people to donate. Daniela has such a way of touching people and reaching them, it never ceases to amaze us.”

 

Beyond Grateful

By Elisabeth, RN, Addisyn’s mother

Elisabeth joins our blog with a message of thanks for the comprehensive and impressive care her daughter received at Connecticut Children’s Medical Center. “I can’t say enough good things about this unexpected surgery and admission.”

photo

My daughter was transferred to Connecticut Children’s Medical Center from the Marlborough Medical Center to rule out appendicitis. She had been vomiting all night, had an elevated white blood cell count, and while they couldn’t see her appendix on the ultrasound at Marlborough, there was fluid and they were concerned. I am a registered nurse, and I work at Marlborough and another Emergency Department. I was apprehensive to go to a hospital that I didn’t work at, because I didn’t know what to expect, and it’s easier to trust people you work with.

I arrived at the Emergency Department of Connecticut Children’s with my tough little stoic daughter looking flushed, with an emesis basin. I knew she felt horrible. Chris Scheinberg, APRN was in the registration area and overheard me say that we were a rule out appointment from another ED. He brought us right back to the triage area, cleaned a room himself, and then triaged us back in the room. I have to say there are not many providers that I have worked with in my nursing career that clean rooms and take vital signs. I immediately knew that we were in good hands. Very soon after arriving her labs were sent to compare with the first set, and she was sent to ultrasound. The first tech was not able to see her appendix, so a second tech came in to try. I really appreciated their persistence in obtaining the best images without unnecessarily radiating her. Finally they were able to visualize her appendix.

A child life specialist was also involved in our visit early on. This very kind, patient woman was great with Addisyn. She had a power point on a tablet to explain what she would experience going into the Operating Room. She oriented her to things that I would not have even thought to tell her. This person really helped Addisyn to feel more comfortable and know what to expect.

The surgical team came down to assess her and prepare us for surgery. I knew what the plan would be for the most part, and they were very good with Addisyn. The original time of the surgery got pushed back because of another patient that needed surgery more urgently, and we were made aware that there was a delay. We appreciated being kept up to date and didn’t mind waiting.

When we arrived in the OR we met the anesthesiologist who was very personable. For some reason this was the part I was most anxious about, but he answered all my specific questions very patiently. The whole OR team took the time to introduce themselves to my daughter, and my husband and I. They gave us the expected wait time and didn’t make us feel rushed as we kissed her and told her how much we love her.

We very anxiously waited in the empty waiting room, trying to count down the hour that she was expected to be in. Dr. Finck came out around 45 min to tell us everything had gone very well. The anesthesiologist also came out to check in and tell us how she did. They made us feel so relieved. Her post-op nurse was phenomenal.

Her care on the floor post-op continued to be comprehensive and impressive. Her nurses were all very sweet to her, thoroughly assessed her, checked in on her pain level, and encouraged her to eat and move. Every question we asked they were able to answer, or find the answer to. The techs also were very friendly, and helpful with Addisyn. I wish I had her nurses names, because I wish I could personally mention them in this letter, but I unfortunately did not write them down. I believe one was Carly.

Everything else about her admission was top notch. And this is coming from an overprotective mother, ER nurse, who knows the system and how good and bad care can be. From the therapy dog, to the craft cart, to the camp that comes to make crafts with the kids. I can’t say enough good things about this unexpected surgery and admission.

Please pass this letter on to the management of the ED, OR staff, post-op nurse, and wonderful nurses on the 7th floor. We are beyond grateful for the high quality care and compassion our daughter received at Connecticut Children’s Medical Center.