I’ll start blogging regularly to keep up on events but this is our story so far….
When I woke up on Monday May 9, 2011 at 12:20am with contractions I thought I would go to the hospital, have a baby, stay 1-2 nights and then come home with my little baby boy. I had no idea the day would turn out as did.
May 9, 2011 – At 7:43am our little boy, Bronson, finally made his appearance. Immediately the doctor thought there was something wrong because his stomach was very distended. It didn’t take long for Bronson to show other symptoms of breathing trouble and low blood sugars. As the day went on Bronson started to develop some other problems and it was quickly decided to have a transport team from Sick Kids Hospital in Toronto to fly to our hospital, check him out, and then decide if he should go to Sick Kids or another hospital with a NICU. Once the transport team arrived there seemed to be no question as to whether or not they were going to bring him back to Sick Kids with them. 9 hours old and Bronson had his first helicopter ride to Toronto Sick Kids.
For the following 2 days Bronson had a constant stream of doctors, lab technicians, and nurses coming to look at, assess, test and take blood. 3 days old and still no diagnosis for Bronson. It was so frustrating not knowing what was wrong with him and waiting to hear anything…anything at all!
Thursday May 12, 2011 – Bronson was 3 days old when we had 2 doctors come to meet us. I was not expecting to hear “We’re from Oncology”. Seriously…oncology? My mom died of cancer when I was 7 and my husband was diagnosed with cancer exactly 4 years and 1 week ago from when Bronson was born (he’s been cancer free for 3.5 years now!). I was done with dealing with cancer… But I sucked it up. The head doctor went on to tell us that he had a strong belief that Bronson had Bilateral Adrenal Neuroblastoma. They had to run a few more tests to confirm the diagnosis and then we were to meet with the oncologists again the following day. It was such a long night of thinking, “what if the diagnosis is wrong, but what if it’s right?!”
Friday May 13, 2011 – Bronson is 4 days old. My husband (Jon) and I went into the hospital that day not sure what to think. Finally after waiting all day the oncologist came to talk with us. It was confirmed, Stage 4S Bilateral Adrenal Neuroblastoma. We were told that neuroblastoma is the most common cancer in paediatrics but that bilateral neuroblastoma was very rare. So rare in fact, only 45 cases have been reported in North America… ever! I hate the word “rare”. My mom’s cancer was “rare”, my husbands cancer was “rare” and now my sons cancer is “rare”.
The doctor didn’t think chemotherapy should be need to be started until Monday unless there was a sudden change in his status and things turned life threatening. In that case they would start chemo immediately. 10 minutes after this meeting ended the oncologist came to find us… Bronson’s status had quickly declined while we were in the meeting and had to be intubated, put on a oscillator ventilator and chemo needed to be started as soon as possible that night. His liver had increased in size so much that it was putting pressure on his lungs and causing the breathing problems. The bottom portion of the liver was also putting pressure on his kidney and ureters causing him to have peeing problems which in turn caused him to retain a lot of fluid. His liver was 4x the normal size it should be because of the cancer.
Only 4 days old and Bronson was already receiving chemotherapy. All I could think of was that no child at 4 days old should have already had countless x-rays, ultrasounds, blood tests, a bone marrow aspiration and now have chemotherapy starting. But we knew that many many many people were praying for Bronson and that God was with us. It was comforting to know that so many people were praying for us to make it through this.
Monday May 16, 2011 – Bronson had completed his first round of chemo and appeared to have tolerated it ok. However, his breathing status wasn’t improving and he was starting to retain a lot of fluid. Bronson had gained 3 lbs 4oz in fluid in 4 days. He only weighed 6 lbs 4oz at birth so that weight gain was quite a lot! Imagine how you would look if you gained equivalent of half of your body weight in fluids in less than a week!
We were told that it takes 7-10 days to see any effect from the chemo… so we waited… and waited. Everyday the nurses and doctors would tell us that everything was still the same and no changes. The good news was that his liver had stopped growing bigger which was a sign that the chemo was working. But I didn’t want to hear that things were staying the same… things were supposed to be getting better. Bronson was supposed to be responding to the chemo, have his breathing improve, stop retaining water and make a quick recovery. I wanted to be able to hold my little baby because only holding him once since birth just wasn’t good enough!
Friday May 20, 2011 – We had a meeting with the team of doctors involved in Bronson’s care in order to plan for the long weekend in case things were to suddenly decline. It was planned that if his liver began to suddenly increase radiation therapy would be started over the weekend. Princess Margaret Hospital was informed of the possibility and things were in place. It had been 6 days since Bronson’s chemo was started and we still had no changes or improvements. By this time he had received countless blood products and transfusions. As an effect from the chemo his white blood cell count was suddenly very low and the doctors felt he needed to be put into isolation to prevent any infections. So off to an isolation room he went. On the bright side to being in an isolation room Bronson now had his own window, with a pretty good view, and didn’t have to listen to any other babies crying!
Saturday May 21, 2011 – It was found that Bronson had an infection starting to grow in his PICC line as well as his peripheral IV. Just what we didn’t want… an infection. Antibiotics were quickly started with the hopes to catch the infection before it went into his blood and caused major problems. And still we were told no changes to Bronson’s status… his liver was still the same size, breathing problems still the same, and still retaining water.
Tuesday May 25, 2011 – Day 10 after chemo and still no improvements. The oncologist came by and told us that he thought that, although things weren’t getting worse, radiation therapy would be a good idea. He said we could wait another 2-3 days and see if things would change but if things became worse with Bronson’s breathing or if there were any other complications then getting him over to Princess Margaret (PMH) for radiation would be a problem. So we decided to go ahead and start radiation once a day for 3 days. First, before anything was started Bronson had to be switched over to a conventional ventilator in order to be transferred to PMH. It was questionable whether or not he would even tolerate the change in ventilation but 4 hours after the change he was still doing alright! The transport team came to get him. They put him into an isolette with all of his equipment and off we went. I didn’t realize that there are underground tunnels connecting all of the hospitals in that area. It was about a 15 minute walk in underground tunnels (they would be an ideal location for a horror movie) over to PMH and Bronson did well the entire time. They were worried about how long Bronson would last on the conventional ventilator so timing was everything… so far everything was going smoothly. Until the radiation department had computer problems (they obviously use PC’s and should probably upgrade to mac’s) and delayed everything by 45 minutres! Go figure! But thankfully Bronson was holding his ground and didn’t have any problems at all which I think was from all the people praying for him and for things to go smoothly with the transport!
Today, Wednesday May 26, 2011 – Bronson went for his second dose of radiation today and had no problems with the transport over to and back from PMH! Thankfully they also didn’t have any computer problems or delays today! I’m so sick of waiting… the Radiologist told us yesterday that we won’t see immediate results from radiation and it may take 5-7 days. Why must every therapy Bronson receives take an average of 7 days to see results! I want to see results now!! On the bright side, he is still on a conventional ventilator and hasn’t had to be switched back to an oscillator! That is what they were hoping for! 🙂
Last night Bronson had an episode of arrhythmia and a very high heart rate of 209 but once he was given medication it quickly went back to normal. An x-ray was done today to check the placement of his PICC line and it’s in a little bit too far which would have caused the arrhythmia and heart rate problems. As long as his arm with the PICC is kept down it shouldn’t cause any more issues. If they remove the PICC line and reinsert it would fix the problem however, because Bronson is so puffy, retaining so much water it would complicate the procedure and they can’t risk it not going back in because that line is a necessity. So for now they’ll just try and keep his arm down!
I need some good news this week! I’m so tired of being told, “we have to wait x amount of days to see results”. I just want to hold my little boy again (still only held him once) and be able to bring him home.
I look forward to the day when I can get mad at Kallie (15 months old) for stealing Bronson’s soothers. I look forward to having sleepless nights. I look forward to struggling carrying a 15 month old, who still isn’t walking, and an infant carseat at the same time.
I just want my little boy home!