heart problem?

After a Friday surgery we were anxiously awaiting the doctors to give us the OK to start chemotherapy that coming up Monday. Monday came and we were ready to do a “standard heart test” that will test the heart to make sure it is ready for chemo. We were told it was nothing to stress about because it is a standard test that 99% of the kids pass and they just do it as a precaution. THANK GOD THEY DO BECAUSE THIS KID FAILED! They came in shortly after and told us his heart was at a 16 and needed to be at a 27! I lost it a little because I finally felt that there was a light at the end of the tunnel and BAM light gone, knocked back down on our butt. I guess because of the tumor, his heart had been over working and the left side was swollen. I asked multiple times if this was a heart problem where he would need surgery, transplant, or additional maintenance and there were positive it was just from the tumor and it would be something that we could control with medicine and eventually wean off the medicine and he would have a normal heart. They rushed him to the cardiac ICU and started heart medicine that can only be administered through that unit. We stay there until the 23 and were happy to be moved back down to our home, the cancer ward. I guess they stabilized his heart enough that he could just go back on a basic heart/blood pressure medicine that the cancer nurses could give him.  

June 17 surgery day

Knowing your child need an operation is one thing, having to go through with it is another. I think there are many positives to having a baby in this situation verse a toddler or someone who can talk back and ask questions. The only bad part is not being able to communicate to the baby about what is going on and reminding them it will all be ok. His surgery was scheduled at noon, with a chance of going in early. We had to start fasting at midnight and anyone that has a baby knows that is also hard! Around 10:30 we were told they would be taking him within the hour. That is when I started to freak out. It became more real and even scarier than I thought. This risk of anesthesia and just the risk of operating on a 5 month old became so overwhelming and almost unreal.

They came in to get us, and both grandmas, Aunt Shawn, Alyssa and Alexis kissed Dominick and said bye. Ryan and I asked to walk with him to the pre-op room and to go as far as we could before letting him go. We sat in the room with many others waiting to go into surgery, met lots of the team that would be in the operating room and anxiously awaited them coming to take him back. Lucky for us, we feel in love with the surgeon and the anesthesiologist. We met the nurse that would be with him in the PICU if he needed to go, and we were also prepped as to what he might look like coming out of surgery. The time came to say good bye and I lost it. I was holding myself together pretty well, but when someone asks you to leave your crying baby it is a terrible feeling. I said I wanted to seriously walk until I could not walk with him anymore. They let us walk right up to the door and they asked us again to say good bye. There are honestly no words in the English language to how this moment made me realize how much I was in love with my son. Ryan hugged and kissed him and I did the same. Right as I handed him over to the team of professionals and doctors, I felt as though I was having an out of body experience. I lost myself in that moment. It was in that moment I cried harder than I have ever cried in my life. Nothing could have prepared me for the emotions I was going to feel. I was crying so hard I actually could not speak, could barely walk, and it is safe to say I had trouble breathing. We had to give our phone number to the front desk to get update texts on how the surgery was going, and Ryan had to talk because I just was gasping for air. I went out side, put my hands over my head, and tried taking deep breaths to calm down. Once I got myself together, Ryan and I headed to a near-by friends house and showered and rested. We went to Chili’s with friends and family and tried having a peaceful day since we knew we were in for the journey of our life. Once we got back to the hospital we sat in the waiting room for hours waiting for the final text! (Throughout the day, the hospital sent us text messages about how it was going… things like, starting surgery, port in, Dominick is doing well, working on tumor, tumor is out, Dominick is doing well, and the final one was a phone number to call because he was ready to be seen! It is amazing they can do this! Everyone said they started doing this so parents would leave the hospital, get something to eat, and not just sit around and wait by the door.)

We called the number and the surgeon answered, came and showed us the pictures of the tumor (6 inches long, 2.5lbs), then took us up to see our baby. He went in around 11:45am and we got to go see him at almost 7pm, so it is safe to say we were excited beyond words to see out baby boy. The surgeon said he rarely sees kids that don’t have to go to the PICU for a few days after an operation, but his breathing tube was out, and he was on his way back to the cancer ward and NO PICU. His scar had no bandage and was already healing! This kid was amazing and stronger than Ryan and I would have been. In the recovery room we could not stop smiling and taking pictures! We were so thrilled to see him doing so well and thriving like a grown man! Around 9pm we got to go back to our room. This has to go down in history as the longest day of my life!


 

Who is to blame for this tumor?

I think this is very important to write about and tell people about… I knew I was not to blame but I had a very hard time accepting I am not the one to blame. I asked every doctor and professional that walked in to our room. I felt as though I could have been more careful during my pregnancy, stayed away from some of the food I ate etc. I finally have the surgeon say something that made sense. He said if tumors were caused by something I did during pregnancy, it would be easy to cure. If it was from something I ate (lunch meat, yogurt etc) those food places would be closed down. I also felt bad because I stopped breastfeeding so early and people always say breastfeeding babies are healthier. All the doctors said the same thing about that too… if tumors came from non-breastfeed babies, more women would breastfeed and soo many more children would have this problem. I had professional after professional telling me there was nothing I did or could have done to make this happen.

So the next blame game victim was me again, but this time why didn’t I notice! I got over the fact it wasn’t something I ate or feed him, but WHY DID I NOT NOTCIE! Was I a bad mom? Would a day-care provider that sees children all the time have caught it sooner? And again, they said I have a big kid, so his tummy being big was kind of normal. They said if he was super skinny with a huge tummy, I would have probably noticed and brought him in sooner. Then as I started feeling his tummy the question came up, how in bathy time or baby massage time (lotion time) did I not notice one side of his tummy was larger and harder than the other side? The week we came in I was hooked to my camera and kept looking at pictures and kept asking myself, why did I think this HUGE tummy was normal? Am I stupid? Everyone made comments about how big he was and how hard he was… and I really that bad of a mom to think this is a normal size tummy? I think this is something sadly I will always feel is my fault. I do think I should have noticed sooner, and I do think it is a little my fault. I am a stay at home mom and my sole purpose is to make sure my baby is healthy.  Yes, thank God I took him in for an ear infection and the Dr agreed and did test… but it is hard to not blame yourself.

Lastly, my pediatrician. Everyone wants to point the finger at him because he is the doctor but I actually blame myself more than him… I am with him every day and this guy only sees Dominick once every 2 months. At month 4 he said he was big, but his weight and height were both in the 90 percent so it made sense to him and us. I also took him to an asthma specialist and he said the same thing, big kid, heavy weight. The thing I asked the specialist here is why wasn’t it caught and should it have been caught. They said these kind of tumors are usually caught when they are HUGE and by parents. They double in size when they grow, so when they start they get crazy big. The side effects are spitting up (normal in babies), breathing funny (also normal), big tummy (sometimes normal with allergies and constipation and big babies) and high blood pressure. The high blood pressure is the only thing the doctor would have caught. HOWEVER, they don’t check blood pressure until children are 3. All in all, Dominick’s doctor did the right thing by ordering a test and checking why his tummy was getting so big. Everyone agreed that if he said it is normal go home, and later in the week I found out it was a tumor, it would be a different story. The doctors at Loma Linda also reminded me he is a pediatrician not a cancer specialist. They said with primary doctors, they will only see ONE cancer case if any in their whole practice. Our doctor also has called and checked on us and could not be more worried about this little guy. And just for the record, Ryan and I plan on going back to him once we get released from here because he was so concerned and apologetic with us.

June 14th... the day that changed our lives....

This is the day I will always remember as the most emotional day I have ever endured. This was the day that changed my life forever…

I took Dominick to the Dr. the day before because he had been pulling on his ears. Some people say that baby’s do that when they get teeth, but my Dr always said bring them in and don’t believe “teething” rumors! While we were there I asked about his tummy being SOOO much larger than usual and he agreed and said it was probably constipation and just to get the X-ray done as soon as I can. I felt bad because we had dinner plans that night so we decided to go the next morning. The next morning, we got there around 9 and had the simple test done. Here comes what changed my life… We got to the car and Dominick’s doctor called before we left the lot. He said the hospital called and are very concerned with what they found. He said you need to come back upstairs and we need to have more test done today! I started crying and felt as if I was going to pass out! He used the word “mass” and I asked if that meant tumor… he replied yes. We went to upland to have an ultra-sound done, and the tech asked us to stay put while he got the radiologist! That is NEVER a good sign. The radiologist told us a huge tumor was growing out of his kidney. They couldn’t tell if it was attacking any other organs and to go home, pack for Loma Linda and get ready to be admitted! Ryan and I were a mess!!! I have to say, in that moment, Ryan and I realized the severity and the fact we could lose our son as an outcome. I think it came as such a shock because we truly thought we were going to have to change formulas or take meds for constipation or a food allergy.

We got to Loma Linda and they admitted us to the Cancer Ward? I was so confused because I had not really made the connection that this tumor could be cancer. Later that night, they did a CT-scan and the surgeon came in and showed us what they found and Ryan and I were SHOCKED to say the least! 90% of the picture they showed us was tumor. They explained they were going to see if he needs Chemotherapy first to shrink it or just go straight in and get it out… After lots of debate and tests, the surgeon and doctor left it up to Ryan and I. The surgeon said if it was his kid he would do the surgery because he was 100% sure he could get it all out without damaging any other organ. So, Thursday June 16 it was official and we were scheduled for surgery Friday June 17 and noon to remove this massive tumor.