The First Round-8

 

On August 5th, the next day, they did not waste anytime. First thing in the morning Jeremy went to the O.R. to get a PICC line (peripherally inserted central catheter) inserted into his right arm. This is an IV that can be used for a prolonged period of time. It's often used to administer chemotherapy, and is the preferred IV as the risk for infection is very low. The IV was inserted peripherally and then routed to Jeremy`s superior vena cava via larger veins. A few hours later Jeremy was receiving his first dose of chemotherapy.
     We were told that although Jeremy`s cancer, infantile fibrosarcoma was common, metastatic infantile fibrosarcoma was not. According to the doctors, this type of cancer did not exist up until it decided to invade Jeremy`s body. Once again the doctor`s exhausted their resources and discovered that nowhere in literature had this cancer appeared, nor had any other doctors come across this cancer anywhere else in the world. Jeremy had been assigned to a different oncologist, one that is known to take on any case, especially the tough cases. He devotes a lot of time for research and therefore is very familiar with the rare forms of cancer. He also had never come across this cancer before. We kept being told that Jeremy`s cancer was unique. This wasn`t exactly comforting as it meant that Jeremy would not have the ``cookie cutter`` treatment where they knew the outcome and could follow a protocol. It meant that for Jeremy`s case they would be playing it by ear and figuring it out as they went.
     The preferred form of chemotherapy for infantile fibrosarcoma is called VAC. It stands for Vincristine, Dactinomycin and Cyclophosphamide. The oncologist only wanted to start out by giving the first two medications as they all have adverse side effects but for the first two at least they are tolerable. With these medications Jeremy would be expected to experience severe constipation, jaw pain, nausea and mucositis (mouth sores). These chemo meds were supposed to be the lesser of evils. He would keep his hair and these meds didn't need any prehydration or post hydration so they would be given in under 5 minutes. The protocol was to give the two meds and then once a week for the next two weeks he would only receive Vincristine.  We sat by Jeremy's bedside as he was administered his first dose of chemotherapy. Then we were told to wait and see how his body and the cancer would respond.
     The following day we moved back up to the 3rd floor, 3B,  the oncology ward. I had been floated as a nurse to this unit before. I liked the nurses and the culture but always said that I couldn't work there because it was so sad. It seemed every time they had report, a patient that they had cared for had passed away. These poor children did not win the battle against cancer. Would our baby be strong enough? I had to remind myself that although we only see the sickest kids at Children's, there are plenty of survivors of cancer out there living life to the fullest. This is what I had to promise for Jeremy. Take each day by day, do not think too far ahead or your thoughts will get away with you. Life is short, enjoy each and every moment. These are my new mantras.
    All in all August was quite fun filled. Brent was off work for several days so we switched out each night so that one of us would always be with either Chloe or Jeremy. Chloe would come in and visit her brother everyday. She loved coming to the hospital because not only did it mean family time but also time to play on the deck which was filled with all kinds of toys. On August 11th we got our first day pass, so the whole family packed into the van and headed to Stanley Park. And on August 12th nana came to stay overnight with Jeremy so that Brent, Chloe and I could all be home at once and have some time to just enjoy Chloe. Friends and family came to visit and we enjoyed many hours sitting in the sun on the deck at the hospital. Brent eventually went back to work, and we had a semblance of a normal life as the doctors got more comfortable with Jeremy and lenient with us which allowed us to get daily passes and the odd overnight pass. On August 21st we were all able to be home for Chloe's birthday. Brent and I were so grateful to get that opportunity as we were always mindful of not letting Jeremy's illness take away any of the much needed attention for Chloe.

                             

Hanging out in the sun on our deck at the hospital

 Chloe playing at Crescent beach and taking a moment to say hi to daddy at the hospital

 

More invaluable time in the carseat

 

Chloe and Jeremy having a bonding moment on the hospital bed as we get ready to go to Stanley Park

Jeremy taking in the sights his first time at Stanley Park

  Whatchoo lookin at?

Getting Chloe to stop playing briefly so she can eat yummy burritoes courtesy of our friend Travis, on the awesome hospital deck

Our little boy is getting so big! 

Excited to see my sister and daddy!! It's Chloe's birthday tomorrow and she turns 2!!!!

Having a  much needed rest before we head home for Chloe's big day.

Chloe's birthday!! Happy Birthday big girl!! xoxo

Chloe sharing bevvies with her BFF Keira.

Opening presents.....boy did she ever get spoiled!

Owen offering his help with opening presents

Having some giggles with mommy

A princess birthday cake for a princess!

                                                                                                       Yum!!

Saving the best for last: getting some good birthday cuddles in with my big sister!!

Trust Your Instincts-7

 
  On July 31st as I changed Jeremy's diaper and was getting ready to go out with the kids I noticed that Jeremy's stool was an odd color. I smeared it across the diaper and saw blood. Oh no, Jeremy was having another bleed, or was this an ongoing bleed from the big one he had a month ago? I packed my bags, left Chloe with aunty and uncle and headed back to the hospital. I was finally starting to realize that Jeremy's body always had a way of telling me when I should be concerned and seeking help. Although I never wanted to believe that Jeremy was sick (denial is a powerful thing) I knew deep down when he was in trouble.
     When we got to the hospital they did blood work immediately and discovered that his hgb (a proponent of blood that carries oxygen throughout the body) was very low and that his neutrophils (a proponent of white blood cells and the first immune cells to arrive at the site of infection) were also very low. Jeremy received a blood transfusion and was admitted to the hospital on the 3rd floor. Soon after the transfusion, Jeremy's blood recovered well but the doctors were not comfortable sending us back home. They wanted to do more tests because they figured maybe something was missed. They did another scope of his upper and lower GI tract and discovered lesions throughout. These were cauterized and Jeremy was started on a continuous infusion of a medication used to prevent further ulcers. Jeremy also had several small round bluish-black spots on his abdomen and scrotum and a red spot on his right eye that I wanted to have looked at. I noticed these spots a few days earlier and they seemed suspicious to me even though I was told that they were probably a result of the surgery and scopes and that it was just veins being pushed closer to the surface. Dermatology would be involved and they would hopefully figure out what exactly these strange things were and whether it was something to be worried about.
     Dermatology came and took some photos of the blue spots and also took a biopsy of one of them. An MRI was completed and there was more bad news. The cancer was not localized, it had somehow metastasized. There were hundreds of tumors spread all over Jeremy's tiny little body. The cancer had managed to find its way everywhere from his brain to his GI tract. Ophthalmology came and took a look at Jeremy's eyes and found large malformations in the backs of his eyes, the cancer had also taken over there too. There was a large lump developing under Jeremy's right ear, apparently the tumor was attacking his immune system and the lymph nodes were responding. Chemo would not be delayed, they would start the following day. Because Jeremy was so small and they were worried about another bleed happening, we were transferred back to the ICU for one night.
     Every time we thought we had heard the worst, they always came back with more bad news. Brent and I were beside ourselves. Luckily we had each other as we were at the hospital together. We never wanted to leave Jeremy's side at this point. We held each other and cried. We were in disbelief that our baby boy would have to go through this and just reeling with the cruelty of the situation. We called close family and friends to let them know. Brent's parents came to visit, bringing Chloe along as we really wanted to have our family all together. Brent and I strongly believe that love really goes a long way and if you surround yourself with love when in a time of need, you will be able to pull through.

Our little sleeping angel. So innocent and unaware of what was going on with him.

Surrounding Jeremy with love, sending him strength and positive energy so that he would be able to stay strong and fight through the long journey ahead.

The Call-6

   
On July 29th, our world was once again turned upside down as we received life shattering news: Jeremy had cancer. We had just finished breakfast and were enjoying the morning when the phone rang. I looked at it and saw BC Children's on the call display. I thought our doctor was calling about another follow up appointment. I answered and immediately knew something was wrong. Our usually cheerful doctor's voice now sounded somber and heavy, he had news for me and it wasn't good. He said the pathology report on the mass that was removed a month earlier had come back. I leaned on the counter for support as he told me that Jeremy had what was called "infantile fibrosarcoma". Sarcoma. I knew that was cancer. My mind went fuzzy as I tried to grasp the meaning of the rest. How was it possible that Jeremy had cancer? Hadn't he been through enough already? When was he going to get a break? He was still so tiny! I heard the doctor saying that the oncology team would be calling us to discuss treatment. Our doctor apologized, saying that he felt horrible phoning on such circumstances and that he was unable to explain things properly to us as this was not his area of expertise. He was optimistic and hopeful that the cancer was removed with the surgery.
     A few hours later we found ourselves again, back at the hospital, dealing with yet another diagnosis. We had spoken to an oncology fellow that I knew well from working with him on my unit as a resident. He reiterated what the surgeon had said, that Jeremy had fibrosarcoma. It sounded a lot scarier than it was he said, because he figured that the cancer was localized under Jeremy's arm and was incidentally removed with the surgery. The only question was, "did they remove all of the tumor?". The only way to know would be by doing an MRI. The oncologist didn't want to jump ahead and do anything quite yet. He explained that the way oncology works at Children's is that all of the doctors convene on Thursdays for a tumor board meeting. The cases are discussed and they come up with a plan together that day. I asked if we could come in and see the oncologist so I could talk to him face-to-face and hopefully make sense of all this overwhelming news. It was also a Friday and I didn't want to wait until the weekend was over to have this discussed properly. Once at the hospital, the oncologist did an assessment of Jeremy and calmly explained that although we didn't have a plan yet, Jeremy's case would be followed closely. He also explained what infantile fibrosarcoma was. It is a tumor that develops from fibroblasts (cells that produce connective tissue) so it tends to occur in soft tissue or areas surrounding bone. The prognosis is good, and when diagnosed in infants, the prognosis is excellent.
     The oncologist suggested we go home and try to not to let this overwhelm us too much. He stressed that nothing would change over the weekend and that first thing Monday morning a plan would start to be developed. We were expecting to come back the following week for an MRI and we would go from there.
     Brent and I went home with heavy hearts and plenty on our minds. Whatever was going on with our little baby, it was always one step ahead. Each time we made one step forward, we took two steps back.

Sweet Summer Days-5

 
 Once again we found ourselves at home, just in time for the sunshine; summer was in full force! We spent endless hours in the sun, visiting the neighbours, having friends and family over for visits, going to the parks, and the beach. We even went for a follow-up appointment to see our vascular surgeon and he removed the dressings from Jeremy's surgical site under his arm and was very impressed with what he saw. No redness, no swelling, the wound was healing nicely. All that remained were steri-strips that were used to hold the suture together and these would come off with a bath. Brent and I were so thankful and truly felt that this surgeon had saved our son's life. We fervently thanked him and gave him a bottle of wine, believing again that this was something that we were putting behind us.
     We watched our little boy grow as he hit all the developmental stages. He was starting to grab things, especially the toys on his play mat and any toy that Chloe would let him have. Jeremy just adored his big sister and she thought he was pretty cool too. He was beginning to coo and just craved attention.  He was such a content baby, always smiling and very rarely cried. Our boy seemed so healthy and perfect.

At the water park with mommy and Chloe 

 Showing off my nicely healed suture

Actually getting a little chunky :D !

The great outdoors made me sleepy!

Grabbing my toys on my play mat

Chloe innocently sharing her raspberries with me. "What do you mean he can't have them yet?"

 

I patiently thanked her and tried to explain that I'm too little, helps if you can talk. Eyebrow raising only gets you so far.

I think that Chloe is the bees knees!!!!

Back to the Hospital-4

 

 On June 24th, only a day after Jeremy left the hospital, he gave us another reason to bring him back. The day started off like any other ordinary day. Brent was back to work, so I packed up the kids and headed over to my parents house. I figured it would be nice to have an extra pair of hands around. Jeremy was no different than usual, maybe a little sleepy, but I took this as a blessing. We relaxed and played, had dinner and then headed home to put Chloe to bed. At 1030 that night, after I fed Jeremy, he did a little cough. I looked at him to make sure he was ok and spotted a few blood specks on his lips. I called Brent and said that I was concerned. I thought maybe this happened sometimes when a child is intubated. Maybe their throats get irritated from having a tube in there. Brent thought I should call the hospital, just to be on the safe side. I called the unit that I work on and asked a nurse to pass on the information to the resident that happened to be on that night. She was concerned and told me to bring Jeremy in right away; this was not normal. Unfortunately Brent was already in Campbell River on an overnight for work. Leaving the two older kids in the care of Brent's mom, Courtney and I piled in the van with Jeremy and headed for the hospital. Jeremy seemed fine and unfazed by everything as he slept through all of the commotion.
     Enroute to the hospital Jeremy coughed again and this time it was alarming. There was a lot of blood. It was all over his face, blanket and car seat. The blood was red and fresh, and there was also blood that looked like coffee grounds. This meant that he was no longer coughing up blood, he was vomiting blood and that there was likely an acute and severe upper gastrointestinal bleed. Courtney began to drive faster as we were starting to panic. As soon as we stepped foot into the emergency department, the admitting nurse took one look at us and immediately took us into one of the rooms. We could not wait to be triaged, there was no time. Jeremy was pale, listless, and was not only losing blood via his mouth, but we also discovered large amounts of blood in his diaper. Jeremy was pumped with IV fluids, and after receiving 5 blood transfusions and 3 blood product transfusions, he began to look a little bit better. We were also transferred to the ICU where he could be closely monitored. Courtney, knowing that Brent was unable to come home that night, and unwilling to leave her little nephew's side, kept vigil at his bedside all night. I sneaked upstairs to my unit and forced myself to sleep for about 2 hours. By 0800 in the morning the next day, Brent was finally able to get back to Vancouver. He drove straight to the hospital.
     They intubated Jeremy again and then did a CT scan of the rest of Jeremy's body and determined that there were no other masses. For the time being, the bleeding ceased. They also put in an arterial line (an IV in the artery in his right forearm) that was connected to a machine that monitored his blood pressure continuously. This line also provided an access for blood work so that he wouldn't have to keep getting poked. At this point they were doing blood work every couple of hours.
     There was so much going on at once, Brent and I were overwhelmed and reeling with all that was happening. How can a baby this small handle all of this? Brent and I were both staying at the hospital because we did not want to leave Jeremy's side. Nana and grampa came in with Chloe so we could get a little dose of positive energy from our little miss sunshine.

     The following day a gastroenterologist did an endoscopy and discovered that there was a large mass on the fundus (the top portion) of Jeremy's stomach. They figured it was a stress ulcer brought on by the MRI that was performed on the 22nd. He didn't handle that procedure so well, so they thought his body was having a physical reaction to the overload of stress that it had on his tiny body. They cauterized the mass and started Jeremy on Pantoprazole which is a medication prescribed for people with GERD, meant to prevent reflux.
    On the night of the 26th, Brent and I went home to make sure that we would be well-rested for the big day ahead of us. The next day he was going to have the mass removed from under his arm. This procedure would be two part. The first part would involve an embolization to cut off some of the blood flow in the surrounding veins and arteries. The second part would be the actual removal of the mass. We knew that this day would be long, tedious, and difficult. We were told to expect the day to take a long time, we had not prepared ourselves to have the day take 8 hours.
     It was decided that three doctors would be performing surgery on Jeremy. One doctor would be the plastic/vascular surgeon who we already knew and were completely comfortable with. The other two doctors consisted of a radiologist and a cardiologist. Each doctor had an impeccable reputation. Each surgeon also took the time to meet with us, give us a brief history of their background and explain what role they would play in terms of the surgery. We felt that Jeremy was in excellent hands and the doctors were willing to do absolutely anything to make sure everything went smoothly.
     The radiologist completed the first portion of the surgery in approximately 4 hours with no complications. After inserting a line in Jeremy's left femoral artery, the doctor used this line to go up in the area under his left armpit and around his heart. The veins and arteries that were supplying a large portion of blood to the heart were clamped. The second portion was completed by the cardiologist who could manage the heart aspect of things and the vascular surgeon who would work to remove the mass. As the doctor went to remove the mass, he soon discovered that it's walls were paper thin. Having supported such a large volume of blood for so long, the walls were stretched so thin that with the tiniest amount of pressure on it would cause it to burst. And that it did. Jeremy lost 1 litre of blood. Babies of his age and size only carry 300 mls of blood, this means that as fast as they were pumping new blood into his body, he was pumping it out. The mass was pulled out as quickly as possible.

The surgery was started at 0800 that morning and at 1700, he was ready to come back to the ICU.

Sedated and intubated

     As one can imagine, this surgery had quite an effect on Jeremy's poor little body. Because they had to move much faster than anticipated, some nerve damage was done to his pectoral and scapular muscles. There was the possibility that Jeremy would have no or less range of motion to his right arm and shoulder. His blood pressure was quite high at 110/60, and his temperature was only 35.0 (normal range is 35.8-38.3). He was given morphine and warm blankets which helped to slowly elevate his temp and lower his BP. He was intubated, catheterized for urine output, had a nasogastric tube in for removing secretions from his abdomen (of which they were regularly removing thick yellow secretions), had two peripheral intravenous lines, one in his right arm and one in his right leg, a femoral line, one arterial line, and a drain on his left side to remove bloody secretions from the surgery. His limbs were very puffy, one nurse mentioned that Jeremy had gained an extra kilogram just from the surgery itself. He no longer looked like our little baby boy. I could only imagine what pain and discomfort he was in. The only thing that could get me through this was that in the end, Jeremy would be better. Babies are resilient, I can now testify to this.

Our poor unrecognizable baby, with all of his tubes and the extra kilogram of fluid on board.

     After all was said and done, the vascular surgeon came and spoke to us. After getting a better look at the mass he figured it was an aneurysm with a very large free floating clot. Had the mass ruptured at home, we would have lost Jeremy. The surgeon stressed that he had never seen anything like this before and even looked through his literature, but could find nothing written up on what he had seen. He decided it would be best to send the mass off to pathology so that they could determine exactly what it was.
     The next day Jeremy was taken off his Morphine and started on Tylenol as needed. The following day he was completely able to breathe on his own so he was extubated. With the help of Lasix, a diuretic, Jeremy had a total ouput of 695mls. He was starting to get less puffy, and looking more like himself. The foley catheter came out and Jeremy was able to void on his own. By June 29th, two days after surgery, Jeremy was alert with his eyes wide open,  looking around. He also started to move his left arm around spontaneously, something we thought wouldn't happen. On June 30th the femoral line came out and Jeremy made the move out of the ICU and up to the 3rd floor. This meant that Jeremy no longer needed one on one nursing care and he was getting ready to go home. He was bottle feeding and breastfeeding as much as he liked and that he did! The following day we went home and were prepared to never set foot in Children's as patients again.

Jeremy looking oh so peaceful all snug in his crib on the 3rd floor

Our First Scare-3

 
 On June 14th Jeremy had his first follow-up appointment. This mass under his arm appeared to be growing and the doctor was questioning whether it was a blood clot. He decided it would be best to do an MRI to determine what exactly was under Jeremy's arm. The MRI was booked for June 22 at 1145. After speaking with the anesthetist, as a routine procedure, we figured this MRI would not be much of a big deal and that Jeremy would sleep comfortably through the whole thing and then we would go home after and await his results.
     Unfortunately, things are not always so easy with Jeremy. At 18 days old, he was already an adrenaline junkie. He did go in for his MRI as planned. But instead of taking 20 minutes like we were told, it took them 2 1/2 hours to complete the MRI. Brent and I anxiously paced the hospital grounds as we awaited results. We were told that Jeremy did not tolerate the procedure of being lightly sedated. He desatted to the low 80's (this is your oxygen saturation, meaning the oxygen circulating his body was not at 96-100% where it should be) and his blood pressure dropped significantly. Jeremy had to be intubated and was put on a ventilator. It was shocking to see our tiny baby with a huge tube coming out of his mouth and for him to be unresponsive.
     We were also told that the MRI showed that the mass was growing and the involvement with his heart was getting greater. Fifty percent of the blood was being shunted back through this mass via a major artery, instead of circulating through his body. This was causing Jeremy to get an enlarged heart as it worked ever the harder to try to keep up.
     After spending a long night in the ICU, we took Jeremy home with plans to bring him back to the hospital on the 30th of June to have the mass removed. It was decided that since the mass now had so much involvement with his heart, it would be better to do surgery.