We had our perfect little wedding last week August 25th on Saturday.From each detail of the wedding, to the ceremony, to the reception, it couldn't have been any better.
This past year had its good moments, its bad ones, and now we're onto the amazing ones.
When she was 2 weeks old, I fell asleep on the couch she started to whimper and I went to nurse her. I then said to Ryan "Please take Mal, somethings not right". I put my hand on my stomach and experienced some of the worst pain of my life, so bad that after 3 minutes Ryan called an ambulance. When I arrived at the hospital they did an ultrasound and found that I had gallstones and pancreatitis on top of it. I spent the next 3 days on antibiotics and had surgery to remove my gallbladder. We stayed with my mom for a week following surgery.
I remember just breaking down when he said "They found 2 large masses on Mallory, we're going to figure this out, we'll be praying." My heart sank, it shattered, it fell to pieces. We had no idea if it was cancer, but there were masses, what else could it be? We were introduced to a slew of nurses and an oncologist. They had given us contrast to give to her so we could get a CT in, I held her down as they attempted to put an IV in, which failed to work, I just remember the blood from that alone. How could I take anymore. We were escorted to the 9th floor which is the Hemotology / Oncology inpatient floor of the hospital. By now we had assumed she had cancer, no one could say for sure at this point. Mallory then had a CT scan done, a urine check, and an echocardiogram. We were introduced to Dr. Kurt a pediatric oncologist and Dr. DeMarco who was working with us the whole day. Our families were sitting with us when they broke the news. Mallory had a tumor the size of a baseball on her left adrenal gland and a slightly smaller one on her right side. They were pretty confidant that it was Neuroblastoma because of where the tumors were located and the fact that her catacholomine levels were very elevated. We had never heard of Neuroblastoma. I remember skimming through a chapter of "What to expect the 1st year" and in there it states not to worry about childhood cancer, it is EXTREMELY RARE. The day she was diagnosed all bets were out the window that we no longer knew what to expect. All of our hopes and dreams of our perfect family of 4 just weren't going to happen, our winter of baking cookies, drinking hot chocolate, and doing anything normal just disapeered.
The next day we were bombarded with different doctors. One of them is one of the top leading Neuroblastoma specialists in the field, at the time we had not known this, but she had papers for us to sign so that they could use any left over tumor tissue, extra blood, or urine to use for research. Ryan and I never 2nd guessed ourselves and signed them right away. If there was any hope that someday they'll find a cure we would do anything we could. We also met with an endocrinologist to go over the removal of both of Mal's adrenal glands and tumors, we were told that she would be placed on steroids for the rest of her life. Everytime she would get sick she would have to take more, every time she gained weight they'd have to adjust her meds. At this point we would do anything just to give us time with her, even if it meant a lifelong medication. We then were told that Mallory would have to have another ultrasound because they feared that her right adrenal tumor was connected to her Inferior Vena Cava. After the ultrasound we were told that in fact it was, that they would not removed this tumor at present time because it was a) very risky b) they believed with chemotherapy they could neuter the cancer where it sits not leaving her adrenal insufficient meaning she would not be on any sort of medication. The adrenal gland would grow to take the place of the one they were removing. She would still be placed on steroids so her body would not go into shock from the removal, but then she would be gradually weaned off from them in a few days. Ryan signed papers that allowed them to give her a blood transfusion if necessary. This was a huge thing for both of us, a blood transfusion? She recieved her MIBG injection
We then met with Mallory's surgeon who had given us more explanations to what he would be doing. We had hoped and hoped that they could do a laproscopic surgery verses an open abdominal. But because of her sizes and the fact that the tumor was so large that would not be possible. He had hoped that because the tumor was so large that it did not begin to infuse to her stomach and from what the CT had showed it looked like it was just pressing into it. They would also be putting in her central line Broviac, honestly this scared the hell out of me. They explained it to us, we didn't have another option because her size she could not receive a port, and this would prevent her from many pokes. She would also have a bone scan and a bone marrow biopsy to rule out any more cancer spread.
I remember reading Ryan's prayers Dear God, please be with the surgeons tomorrow. Guide their hands and their minds to do the best work possible. Please let them have a productive surgery, and let Mallory come out of this stronger than ever. Oh, and please God, if it be thy will, please let the doctors leave all that extra blood on the shelf. They won't be needing it. Amen.
To this day, my heart still hurts when I read this.
The next day was the big surgery December 1st, we were lead into a room with Mallory's anesthesiologist, she was a warm hearted person and as the tears floated down our faces she too began to cry. She told us that "I'll be the doctor when we go back, but I'm a mom too!", quiet frankly this was something we will never forget. The love from a person we had just met, that she was taking care of our little baby. They then began to take her back, I held on tight, we all kissed her, and kissed and kissed her. The prayers from around the world started flooding in, for our sweet girl. They were putting in several IV lines in case of her losing too much blood, the thought of never seeing my baby again was heart wrenching, it was the worst feeling in the world. Knowing that she might die was devastating. The took her back at 2:15, everything went flawlessly, the broviac placement and the tumor and adrenal resection. It was not infused in her stomach and when he removed it there was little spillage of tumor cells, a lot of the tumor appeared to be already dying although they could not confirm anything right away. They were able to do the bone scan but not the bone marrow, that would be done when they did her MIBG scan.
(to be continued)
I have never fully written out the full story of Mallory's diagnosis, treatment, and remission. With this month being Childhood Cancer Awareness Month and Mallory's Birthday I thought it would be an appropriate time, I plan to elaborate more and more but for now is my rough sketch.
Ashley, this had me tearing up. I can't even imagine what you all have gone through this past year. Thank you for sharing your story. God bless you and sweet baby Mallory!!ReplyDelete
I have to say even though I have never met you Mallory is the luckiest girl to have you & Ryan as her parents. She is loved in every way, everyday and you were always giving her the will and want to fight. Your family is continually being prayed for as your family begins this new amazing journey. Keeping looking up and loving each other. God Bless!!!!!!ReplyDelete
This brought tears to my eyes. My son has been to DeVos so many times, and his third surgery is just two days away. We too have stayed on the 9th floor, but for different reason. He has VACTREL. Another extremely rare thing for children. I am so happy that Mallory is doing so well.ReplyDelete