I can not even begin to describe the emotional roller coaster our little family went through over the past week. Thinking for even one minute that your child might have cancer is terribly frightening, and we went 4 days thinking this was a likely possibility. Let me back up to the beginning.
Andrew got really sick about 2 weeks ago, and after multiple doctor and ER visits, including an overnight hospital stay, he was diagnosed with Roseloa. A common virus that goes away on its own. One of the symptoms he was having was his lips, fingernails and toenails would turn blue a couple of times each day and would remain that way for 1-2 hours. Even after his diagnosis, the blue episodes continued and no doctor had a clear answer for it.
Per my Pediatrician's recommendation, I scheduled an appointment for an Echo Cardiogram to be performed on Andrew. This is like an ultrasound of his heart. It is not invasive, but because of his age, he would have to be sedated because it requires him to lay completely still for up to an hour. We went for the Echo on Thursday, June 30th, which was after his diagnosis of Roseola. The next day the Cardiologist called me with the results. The first thing is that Andrew has a very small hole in his heart. I had a lot of questions about this, but we didn't get to discuss it in detail at the time. But she could tell me that it is "not that big a deal" and may end up closing on its own, or he may need a procedure when he is a little older (around 5 or 6) to patch it up. Still scary!! But there was a bigger concern.
The Echo revealed that there is some type of mass in Andrew's chest which is pushing against a vein next to his heart. What?!?! The Cardiologist couldn't give me any more information than that since the test really only looks at his heart, so Andrew would need to have a CT Scan performed so we could get a better idea of what the mass is. This was totally unexpected news and so scary because the first thing that comes to mind when you hear "mass" is a tumor. The Cardiologist wanted the CT performed that day, so that definitely indicated to me that is was a pretty serious situation.
I threw Andrew into the car, called Brent and told him to meet us at TX Children's right away. Now I know TX Children's is a wonderful children's hospital, but when we got there it was total chaos. Nobody knew what we were doing there or what our situation was. We knew it was an emergency, but we had to fight tooth and nail just to get them to do the CT scan that day, even though we knew our doctor had put an order for it, stat. There was just no communication between all the departments, and we were not off to a very good start. I could go on forever about all the drama we experienced that first day, and in the end we figured out that we should have been told to go to the ER first, but somehow that information was never relayed to us.
After the CT Scan was done, we waited in recovery for the results. Andrew had to get sedated for this test as well since it required him to lie completely still. Brent and I were pretty much freaking out at this point, but still trying to stay positive. The Radiologist came and spoke to us and told us that the mass was one of two things: one very large swollen lymph node, which would indicate some type of infection that could be treated with antibiotics OR it could be a mass of a bunch of swollen lymph nodes which would be lymphoma. Now when someone tells you that your child might have cancer it is like getting punched in the stomach. You can not think straight, or see straight or have any type of rational thought. It was the worst feeling I have ever felt. Lymphoma is actually very treatable, but of course would require multiple rounds of chemotherapy and long hospital stays. But the survival rate in kids is 80% and higher. We felt better knowing this information, but still a lot to take in.
We immediately checked into the hospital for our first of many nights. The first order of business was to get a bunch of blood work done, so they immediately started poking Andrew and he also had an IV. We even had a Doctor from the Oncology team come to do some initial questioning/examination, even though it was 11:00 in the evening. The next couple of days were filled with visits from doctors, blood draws, urine tests and physical exams. We ultimately knew that Andrew would need to have a biopsy done so they could determine what the mass was. Every time we spoke with the doctors to discuss the possibility that this could actually be cancer, we would always get the same answer, "we just can not tell" or "there really is no way of knowing" - nothing at all reassuring or any optimism. I know that they were trying to prepare us for the worst, but it seemed as though they were all thinking that it probably was, in fact, cancer.
Since we checked in on a Friday night and it was 4th of July weekend, we were being told that we most likely would not be able to have the biopsy done until Tuesday at the earliest. So imagine our surprise when we found out on Saturday that they would be able to do the surgery the following morning. The first piece of good news we have heard in a long time! Andrew went to the prep room around 7 am. He had to go under general anesthesia, which is scary on its own. We spoke to the surgeon before and he told us some news that I wish he never would have mentioned. He told us another possibility was that it could be a neuroblastoma. Without going into too much detail, this is a common type of childhood cancer with a low survival rate and life expectancy of 3-5 years. This was shocking and something we definitely did not need to hear just before our child was going into surgery. To say the least, Brent and I were total wrecks during that 1 hr and 45 minute procedure. Knowing that it could be a neuroblastoma, we were hoping for lymphoma at that point.
Thankfully, the surgery went well and without any complications. The only info the surgeon could report was that he had "never seen an infection where the lymph nodes were that big and swollen". Again, another doctor pretty much telling us that it was probably cancer. The pathology on that type of biopsy could take days to get done, and we were told we probably wouldn't get much info from preliminary results. Again, being 4th of July weekend, we expected that it would take even longer. I hate 4th of July weekend.
Andrew was pretty much out of it following his surgery. He slept most of the day and ate and drank very little. We had to give him morphine for his pain from the incisions. That was a hard day. All we could really do at that point was wait for the results. Waiting sucks. We would get out of the room, just for a change of scenery, but that was even harder. We had been placed on the cancer floor, so when we left the room all we would see are these little kids walking around with bald heads, hooked up to their IVs. That sight really started to get to us, as we were sure that was the future we were in for.
To our complete surprise, some doctors from the Oncology team came to visit us Monday afternoon with some news. They were able to tell us that the initial results were coming in and that it did not look like cancer at all!! Of course, nothing was definitive at that point, but they were starting to look more at the Infectious Disease route. The testing would continue, but they were not even looking at cancer as a possibility any more! This was the most wonderful news we had heard in a long time and so unexpected! The doctors said that they had never seen results come in so quickly before. We were so overcome with emotion upon hearing this news- mostly happiness and relief, but we also realized how lucky we were since most parents got the news that we were fearing the most.
We were quickly moved to another room on another floor of the hospital. We would have to continue our hospital stay until we got more results from the biopsy and doctors could determine what type of infection Andrew had. Later that same day we were visited by the Infectious Disease doctors, and they said that they were able to make a preliminary diagnosis of Histoplasmosis. Histopolasmosis is contracted in a number of ways, but Andrew most likely got it just from living in Houston and breathing it in the air. It is more commonly seen in other states like Louisiana or Arkansas, but it is something that is also seen in Houston. It is actually a pretty common infection, but most people who get it never have any symptoms and never know they have it. Andrew has a pretty severe case which can be treated with an antifungal medication, which he will have to take for at least 3 months.
Here is some information on his infection:
Histoplasmosis
We were finally cleared to go home on Tuesday, July 6th. We spent 5 uncomfortable nights in the hospital and it was really starting to take its toll on all of us, especially being 30 weeks pregnant. The doctors told us that this was the fastest they have ever made a diagnosis of Histoplasmosis at that hospital. We are so lucky! Andrew is feeling so much better now, and we can go back to our normal lives. He is not contagious so he can be around other children and it is safe for him to resume all activities that we did before he got sick. We will have some follow-up appointments with our pediatrician in the next couple of weeks - they will do some blood work, just to make sure he is getting better and that the medication isn't having any negative effects on his body. We will follow-up with the Infectious Disease doctors in a month.
This was truly the scariest and most difficult thing that Brent and I have ever experienced. We know just how lucky we are that we got the outcome that we did. There are few things worse than having a very sick child and not knowing what his fate will be. We had so much love and support from our family and friends while we were going through all this, and it helped tremendously. I am just so happy to have a healthy child and can now get back to focusing on the arrival of Emily in just a few weeks! I am so glad to have my family back.
