I’m Officially Back!

Happy New Year! I’m officially back! Thank you so much for your patience with my very long absence.

A couple of months ago we found out that my son had a tumor in his chest. From that point on all of our time and energy (aside from trying to juggle things at work) was focused on his treatment and recovery.

The day after Halloween Gabe mentioned he was having chest pains. He’s always horsing around and playing football with his friends, so I pretty much ignored it for three days. On the morning of the fourth day, he didn’t look good and kept saying, he had a deep pain in his chest and breathing felt weird. My first thought was, “Please don’t have pneumonia!” I was just starting the 2020 Talisman Catalog, and Nate was in the middle of big projects at work and studying for his MBA finals. There was no time for additional crazy!

We were able to squeeze in an appointment the same morning and I called into work saying I’d be late.

Of course, Partners and Pediatrics was packed and our appointment at 9:00 didn’t matter. We were called in 45 min later. The doctor came in, checked Gabe over and said, “He looks good.” His breathing sounded normal and when the doctor pushed in areas where Gabe said it hurt, he didn’t notice anything out of the ordinary. I was relieved (minus the bill we’d be getting later for nothing).

He then thought for a moment and then explained that it was possible he could have strained his sternum, or maybe he was at the beginning stages of something that was going around. So, to be on the safe side we did a chest X-ray. We waited for another 30 minutes or so after the X-ray before the doctor came back in. I was thinking to myself, “Wow. Does it really take that long to see results?” What I didn’t know was that all of the doctors that were available were consulting over Gabe’s chest X-ray.

When the doctor came back in we did not get the, “Everything looks good, you guys are free to go,” that we were hoping for.  It was more like he was a little confused, surprised and maybe fascinated with what they saw. He laid down an image of Gabes chest and described what he saw. I knew something was up.  My eyes went right to a shaded area in Gabes chest X-ray. I knew it even before the doctor called it out.

He didn’t want to alarm me.  In fact, the doctor did a great job making it almost sound like this sort of thing happened all the time so it might be nothing to worry about. But, then he said they had never seen something grow in this area before and he recommended that we set up a CT scan at Children’s Hospital.

As Gabe and I were getting ready to leave, Gabe said, “Is this bad?” I said, “I don’t know, but I’m really glad you continued to speak up about not feeling well.” His eyes looked worried and I then said, “Listen.  Right now, I feel pretty calm, so there’s no reason you shouldn’t feel calm, too. You will get through this, regardless if it’s easy or hard, okay?”

When we got back home Nate was surprised how long we were gone. I asked the doctor for permission to have a copy of Gabe’s X-ray as well as a written explanation of what the doctor told me, so I could very accurately share the information given to me with my husband. Honestly, Nate and I were just like, “Okay, this is one of those examples where we have absolutely no control over this so we just need to go with the flow on this one.” I dropped Gabe off at school and I went to work. We made the decision to keep the situation to ourselves until we knew more, so we didn’t utter a word to anyone until after the CT scan results.

The CT scan showed that he had a mass a little bit bigger than an extra large egg in between his aorta, IVC, liver and spine. From there I was on the hunt for a surgeon who specialized in this area so we could set up appointments for more tests.

During the month of November Nate and I took turns getting Gabe to the hospital for tests. At that point we decided to alert our bosses, Gabe’s school and our extended families to the situation. Somehow both Nate and I were able to manage working and juggling long detailed days and long detailed evenings while staying focused and calm. Most nights we were lucky if we got 5 hours of sleep.

My prayers were solely focused on being grateful, feeling at peace, staying focused and being calm. My prayers were answered.  I was blessed everyday. I was able to let go of what I couldn’t control and focus on what I could control. I had enough to juggle. I refused to manufacture more stress in my life. Don’t misunderstand, I grieved and so did Nate. But we had to let go. It helped us to get it out and keep moving.

I wish I could say the catalog went smoothingly, but it didn’t… not even a little. I’ll spare you that crazy story. However, I was able to finish it three days before Gabe’s surgery which gave me enough time to totally deep clean my home and set up a couple things for Christmas.

The more I stayed moving the better I felt. So, even though November was an exhausting nightmarish marathon, it was good for me, because I didn’t have time to overthink and worry.

So, many tests and discussions with doctors took place before his surgery. The crazy thing was not one specialist or surgeon had ever seen that type of tumor in that location before, which was unsettling to hear. We were told they were going to treat Gabe as if his tumor was malignant and not take any chances. That didn’t mean he had cancer, they didn’t know for sure until the tumor was removed and tested.

Day 1 – Gabe went into surgery at 11:00 AM Dec. 2nd. The goal was to attempt the surgery laparoscopically. We were told this was a very delicate and difficult surgery given the location of his tumor. So, we were also made aware of some risks involved. Even though the surgeon did a great job of explaining what would happen during the procedure I could feel myself starting to get nervous. So, I watched some videos online of laparoscopic tumor removal surgeries. Seeing how these types of surgeries are performed really calmed my nerves.

The surgeon came out at 3:00 PM and said the surgery was a success.  However, to safely remove the tumor they had to puncture Gabe’s right lung (and they could have severed some lymphatic vessels) which could possibly lead to complications. We also learned that the mass grew from a 2.5″ diameter to a 6″ diameter. It went from an egg-sized to grapefruit-sized in a month. I asked, if they knew why and they had no idea why or how it grew like that. It’s no fun having your child be a patient with a tumor that the doctors have never seen before.

We were finally able to see Gabe around 4:00 PM and he had the brightest smile on his face. I think I let out the biggest exhale I have ever made. That night Gabe was having difficulty breathing and his heart rate was very low. He was throwing up, his face was swollen and red, and there was no rest for anyone.

Day 2 – He appeared to be improving. We got Gabe on his feet to try to walk but even on his pain meds and anti nausea meds he couldn’t move a whole lot. The surgeon said his body was just having reactions from coming off of the anesthesia and was dealing with side effects. It wasn’t uncommon. Gabe was in pain all night. He was throwing up bile. That night I had a nightmare something was wrong with Gabe. I woke up telling the nurse on staff to please push for an X-ray.

Day 3 – Gabe was in a tremendous amount of pain and couldn’t sit up or lay flat. When the surgeon and his team came in, they wanted him walking and out of bed more, but I explained that he was not well, his chest hurt, he was struggling to breath and he had been throwing up bile half the night. The nurse also followed my wishes and spoke up about having an X-ray.

FYI – Surgeons, don’t really want to hear you say too much.  They also don’t want to hear a nurse make a suggestion about treatment. It was very uncomfortable, but I realized then and there that I had to be my son’s advocate and fight for him. I was tired and a little angry.

Surgeons, with good reason, want their patients up and out of bed ASAP! I get it.  That’s the only way folks will heal, BUT, in this case everything about Gabes situation was not by the books. All of his experiences were new to them, so the way he was reacting to meds and healing was not like most children they are used to seeing.

The surgeon could have requested the X-ray be brought to his room, but instead he wanted us to get Gabe up in a wheelchair and take him to the first floor. He was in so much pain it was unbearable to watch. It was torture. There were three of us holding him up for one of his X-rays.

We learned shortly after the X-ray that his right lung had shriveled up because his right pulmonary cavity was filled with chyle (a condition called chylothorax).

He had to go back into surgery to have a chest tube inserted to drain the fluid. They couldn’t do it right away, because all the surgeons were in surgery. He had to wait a number of hours with no food or drink before the surgery (after throwing up for two days). This was very difficult for Gabe.

Nate and I both had to push back and explain that there was nothing in his stomach from throwing up, so if there is an opening right away, we’d be happy to take it. Gratefully, the surgical nurse was able to squeeze us in that evening vs the following day.

His second surgery lasted an hour and went well. That was my second big sigh of relief.

I was so tired by that point I asked if Nate could stay the night while I drove home, visited with Sam and got a good night’s sleep.

Day 4 – I got back to the hospital well rested to see Gabe feeling much better. From the time I left the previous night to the time I arrived in the morning they had already drained 4 liters of fluid from his right lung.

We were told his recovery could take days, weeks or even months. That was hard to hear.

Gabe had a rough experience to say the least at the hospital. He had one more surgery. He continued to have vomiting, pain and also infections that were hard to watch him endure. All you can do as a mother is be there as a constant comfort and pray for grit for the both of you.

On Day 10 – The chest fluid drainage slowed and eventually stopped that evening. He was finally given food orally for the first time in 11 days. He was told that he had to be on a fat free diet for 4-6 weeks so the lymphatic vessels could fully heal. If he ate more than 3 grams of fat per day, the vessels could reopen and chyle could refill his right pulmonary cavity.

Day 12 – Another X-ray showed that his right lung had cleared up. We were told his tumor was benign and we were discharged late that afternoon.

We were so grateful to all our family and friends who reached out in various ways (emails, texts, calls, cards, gifts and hospital visits). Gabe was so happy to see kids from his primary visit with him. We felt your thoughts and prayers.

We are also grateful to the staff at Children’s Hospital. They did such a fabulous job. I could write another couple pages on several tender moments we shared with them.

Gabe is still currently on a fat free diet for another 2 weeks. He still experiences pain and vomiting due to dietary supplements. He has to take MCT and flaxseed oils so he isn’t malnourished while his body is being deprived of fat for so long.

We really had no idea how any of this would go, but Gabe has been amazing! We couldn’t be more grateful for his positive attitude and sweet spirit.

It’s been a long two months. Nate graduated a week and a half ago!!!! We are all happy for him and are excited to see more of him.

Nate and I have eased our way back into work and I now am easing my way back into the blog and interior design.

I’m going to post on Fridays from now on, so I have more time to work with clients, show you more “before-and-afters” and pull together stronger decor tips and DIY’s.

I’m excited for this year! I am eager to push decor to new levels and just have fun with it! We are entering a new decade with big trend transitions in our near future. Plus, I have a basement that is getting close to being done. My husband doesn’t have school anymore so he can help me with the last little bit.

Thank you again for your support! I cannot do this without your word of mouth! Please keep spreading the word by sharing my website and my services with others! 🙂

If there’s anything I’ve learned from the last couple of months it’s this: We can’t control what happens to us in life. But, we do have full control over how we respond to what happens to us in life. When we focus on what we can control and make the decision to have a positive attitude nothing can stop us!!!

XO,

Melessa