A Bump in the Road

Saturday, December 7, Hudson woke from his nap and it was time for a diaper change. When he stretched out with his little balled-up fists reaching for the sky, I went in for our routine tickles and raspberry belly laughs. What I found made my heart drop.

Lumps. Two of them. On his abdomen.

I'm no doctor, but I'm fairly certain that smooth is good and lumps are bad, so I called our (amazing) pediatrician and left a message. From pictures I text her, she wanted to see more, so we set up an appointment for Tuesday, December 10 early morning in her office to take a closer look.

Tuesday morning was like any other rushed morning trying to get out the door after sleeping just a little too long. We had plans that day. We were going to come back home and get the boys' elf of the shelf, Toodles who had left sugar cookies and M&Ms for us to do some Christmas baking. We were going to dance to Christmas music. We were going to  open our next Advent calendar box and read our daily scripture. We were going to just be us. If I could have known that was going to be our last "normal" moment for a while, I would have let us be late. I would have savored the moment just a little longer. I would have made the appointment in the afternoon so we could have had one last morning together naive to what was coming next. Naive to the word "Neuroblastoma."

Dr. Kohsla, our pediatrician, didn't feel comfortable making a diagnosis, so we were sent to Dayton Children's urgent care from her office with a paper in my hand for orders for an ultrasound to "Determine lymph nodes vs. mass." On the drive over I read it. I felt that motherly instinct that something was really wrong. I felt that gut feeling of dread.

The minute the ultrasound came up, I saw them. Two lumps and one very large circle. A mass. Neuroblastoma. Cancer.

What a blessing Dr. Kohsla was. She drove over to give us the news I already knew in my heart. Hudson, our precious almost-three-month-old baby boy had cancer. I collapsed into a heap in her arms. Cancer? How could it be so? He is a smiling, happy, healthy baby boy! I did everything humanly possible through pregnancy. I exclusively breastfeed. I sing to him. Play games with him. Read the daily updates on a calendar I have set up for him with milestones and the best ways to help him reach them. Where did I go wrong? How could our family, who has already had our share of heartache with three lost babies, have a newborn with cancer?

The ultrasound continued for what felt like hours taking picture after picture so our oncologist, Dr. Dole, at Childrens in Dayton could have the most information possible when we arrived. My mom and Jeff came to my side. Steve ran Cohen home where his parents took him for the rest of the day. What a gift our parents have been to us through this entire week.

Meeting Dr. Dole was the first relief. He had both a ton of information and no information at all, but it was a start. From the ultrasound, he told us we were looking at a malignant tumor coming from Hudson's left adrenal gland called Neuroblastoma and what he believed to be labeled "S4," that has a "good prognosis." We were sent to a room to get admitted for the next four nights and five days.

The next morning, around 5:30, after about two hours of sleep on my part, the nurse came in to give Hudson his first I.V. The best place for it...his scalp. As I helped him through the screaming, I just couldn't get over it: there was a needle in my baby's head. For contrast that would light up his little body to give us more information  in a CT scan as to where the cancer had spread. Unfortunately, CT called later that morning and said contrast cannot go into a scalp IV, so  he had to have a second one put into his arm from IV Therapy. We had to keep the scalp IV because it was running his fluids, so it stayed, and we put a brace over his arm IV to keep him from reaching up and hitting his scalp IV with his busy little hands. Also, to keep the hand he loves to gnaw on so much out of his mouth. He was put under a light sedation to keep him still for the CT scan. While we waited I had my ear pressed up against the door the whole time until Steve asked that I please move away from the door labeled "Radiation." It was just so hard to give my baby to a stranger, let alone to be given sedation.

Going in to his CT scan

 Scalp I.V. 

Daddy giving Hudson the rest of his contrast through a syringe because he wouldn't drink it from a bottle. It took us three hours longer than expected to get him to his scan.

 Transporting back from CT scan. I  could carry him down, but he had to ride back in his crib because of the light sedation.

The CT scan came back showing the tumor is 6 inches by 8 inches, comes from/is acting as his left adrenal gland, has gotten into the blood stream which is making the lumps pop up all over his body, and has put spots on his liver and his lungs.

At tumor board, where the oncologists, surgeons, and residents all get together to discuss Hudson's condition, one of the oncologists suggested we check his bones and bone marrow to make 100% sure it hadn't spread to the bones. This would change his diagnosis if found, so of course we had to check. The bone scan was ordered for 10:30 Friday morning. He would have to get a catheter (which would fall out and have to be replaced by a second one), and an isotope would have to be given into the IV in his arm. This would also require light sedation to keep him still and would be a longer scan.

Ready for his bone scan. We felt more comfortable because it was the same nurse putting him under light sedation who did his sedation for his CT scan.

What we know so far about the bone scan: All of his joints showed activity, which is normal because he is growing so rapidly as a baby, but one little spot in his right femur happened to light up just a little more. They ordered an X-Ray Saturday morning to double check. The X-Ray came back looking okay, but they are taking this week to look over it again.

The X-Ray was the easiest procedure all week long. We were so thankful for a procedure where he didn't have to be put under sedation!

Later Friday, Hudson was scheduled for general anesthesia to do surgery. During this surgery scheduled at 1:30 (though they took him into the OR at 2:30) was to do three things: 1) Biopsy the nodules I found and send the tissue off to pathology to be more certain of our diagnosis of  NeuroblastomaS4. 2) insertion of his Broviac catheter where chemo will be administered and 3) bone marrow/bone aspiration for checking if the cancer has made its way into his bones and bone marrow.

Just out of surgery, nursed, and in Momma's arms.

The preliminary report on the marrow looks good, but we're not out of the woods just yet. The catheter is new and different. We have to learn from home care how to administer Heparin to the lumens, emergency procedures, and just caring for it. The incisions from the biopsy are looking great. Crazy how fast babies heal. Thank God for that!

Hudson just slept through the night for the first time last night, and we are so thankful for every smiling, giggling, drooling moment with our little man. Other than the malignant tumor growing inside him, he is a normal, happy, and healthy baby.

Our first full day home, Sunday, December 15th and Hudson's 3 month birthday! Not how we imagined this picture would look, but praising God that He helped us through this last week.

We will keep up with this blog as our journey continues so that those who are praying can follow along with Hudson. One thing to leave you with, which I am hanging on to with all my heart is, when asked if we will be home for Christmas, our oncologist said YES! Better yet--when asked if we will have a first birthday, he said YES!!! A second birthday? YES!!! A third? A smile and then a YES! :) To which I said, "Sorry...just had to make sure." :)

There are things that can go wrong, and I am very aware of the fact that we will most likely face more struggles through the next three months of treatment. We still have a very big surgery coming up around his six month birthday when they take out his adrenal gland and what is left of the tumor after chemo. BUT...we are prayerful. We have the Lord's hand in all of this. We have laid it at His feet, and we refuse to worry because that is what He has commanded us to do. We give it to God, and we hope you will continue to pray, not with worry in your heart, but with faithful trust that our God will erase this disease in our baby boy and it will just be a bump in the road.

The scripture was written on a notecard from a friend after we lost our first baby. The hope it gave us when pregnant with Cohen was immeasurable. It was shared with me again when we lost the twins, and I couldn't help but know the Lord had bigger plans for us, and then at my baby shower for Hudson, it was read aloud from a book my friends bought him and wrote on the inside cover. Then, in the hospital, our favorite nurse, Kelly had part of the verse on a bracelet I noticed as she was standing over Hudson in his crib one night. Lord, I hearYou. I trust You. I know You have a plan that is greater than I can see, and I love you for that with all my heart. Forever and ever.