Plan B-9

     Life was good. Yes Jeremy had a debilitating disease but we were making the most of it. We had two beautiful children. We were able to get out of the hospital daily. Jeremy was getting chemotherapy, but it was the best chemo you could get as far as chemo's go. On August 23rd Jeremy was scheduled for another MRI. Brent and I were nervous, scans were never good news. The following day we met with our oncologist. As suspected the news was not good. We were learning that with Jeremy, if anything could go wrong or not as planned, it would. The oncologist told us that the chosen chemotherapy was not working. The cancer wasn't responding to it at all.
    The oncologist was not very hopeful. He said the cancer was moving faster than they had hoped. He said  that they would keep trying but he wasn't sure what would work. Brent and I were devastated. Once again we were wrought with grief. We really felt as though we were losing this uphill battle. The oncologist allowed us a two day pass so that we could have our family all together.

Feeling like Jeremy wasn't going to be with us for much longer we gathered our family all together and took some photos.

  

 
                       Our family

   Brent's parents (Don and Susan)

  

Chloe and Owen offering some comic relief to the whole situation

 The Martens (Owen, Dave, and Courtney)

                    My Parents (Bob and Jomi)

The Waldes (Tanya, Tanner, and Hanna)

      The new plan was to go with an alternative. Plan B was a different type of chemotherapy, one that was much stronger and much more aggressive. The oncologist wanted something that would hammer away at the cancer and not give it a chance in hell of surviving. He told us the weapon of choice was called, for lack of a better name, ICE. This was an acronym for Ifosfamide, Carboplatin, and Etoposide. It would kill and destroy the cancer, but not without wiping out many healthy cells as well, so unfortunately the adverse effects with this type of chemo were much worse.

    Out of the three, Carboplatin was the worst, and thus tolerated the least. This medication was known to cause severe nausea and vomiting. And later could also cause low blood counts, loss of appetite, hair loss, ringing sound in the ears, hearing loss (so he would have to have a hearing test prior to each round of chemo), decreased kidney function and low levels of magnesium in the blood, which could cause muscle cramping or seizures. Thankfully it would only be given the first two days.
    The other two medications would be given over the course of 5 days. Because Ifosfamide was known to cause bladder damage, there would be a 2 hour prehydration and a 12 hour post hydration each time this medication was given. This medication also had the ability to cause severe low blood counts, this means that Jeremy would be more prone to infections, bleeding, anemia and feeling tired. Mouth sores, hair loss, changes in liver function, bad taste in the mouth (that could turn him off food) were other side effects. These side effects were the same for Etopiside but it also caused lip sores, stomach pain, rash, and a tingling feeling in  the hands and feet.
    The first thing we noticed with chemo was that Jeremy's numbers also really dropped. He became quite neutropenic which made him very susceptible to any infection. The day after all the chemo was done, Jeremy was started on GCSF, an acronym for granulocyte colony stimulating factor which is a synthetic composition which helps to increase the white blood cells that fight infection. This medication is given subcutaneously (in the top layers of the skin) via a needle and is given until the numbers start to come up. So to avoid having to poke Jeremy daily, he got a device called an insuflon inserted into one of his thighs and the medication would go through this device and into his leg. It was supposed to be less painful.
     Despite the fact that Jeremy was receiving this medication that was really supposed to wipe him out, he did not seem to fazed by it all. Jeremy was such a little trooper. He always smiled and had such a great temperament. Although I'm sure he was in pain and discomfort, he rarely let it show. His appetite did decrease especially in the first 2 days of ICE, but Jeremy still persevered and kept eating. He was loaded up on anti-nauseating meds which seemed to be enough for him. He didn't get mucositis like some of the other kids and therefore did not require a feeding tube. He was such a fighter all the time. People kept saying this was so remarkable and it really was, it made it a bit easier to get through it all.

  

Jeremy having a snooze after all the hard work eating.

 Jeremy taking a breather in his crib. All finished his first round                          of ICE chemotherapy.

Round one complete!! Feeling pretty good about it (and maybe a bit stoic)

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!!!!