A New Year-15

     The year brought on a feeling of newness and hope. We kept hearing that the chemo would be coming to an end in the near future. We were feeling that there was finally a light at the end of the tunnel. Another change for the New Year was that Brent was going back to work. He had thankfully been off work for five months which really helped us out at the time and gave us the chance to completely focus on getting Jeremy better while also making sure that we didn't lose sight of the importance of family and our baby girl Chloe. Brent was anxious to get back to work and to get back into flying. I was excited for him too, but also a little apprehensive. Jeremy would still be getting admitted for chemo and what about complications from the chemo? Luckily we had Brent's parents who were there all the time, any  time. Whenever Jeremy had to go back to the hospital and Brent was away with work, Brent's parents would take Chloe. I was, and will always be forever grateful!  

     The month started off quite uneventful. Brent went back to work January 2, and Jeremy was due back in the hospital on the 3rd for another round of chemo. He received his chemo over the five days that it took to get and then on day six we were discharged home!! This was a really weird feeling. Chemo was done and nothing else was holding us back, so off we went back home. 

     

Feeling good and ready to go home!

Chloe said "I'm so happy to have my baby home!!!" as she snuggles with him in his crib.

     We were home by dinner time and had a fun night at home with Chloe. Brent was working and overnighting somewhere. Jeremy seemed a bit out of sorts but I thought that it was due to the harsh chemo that he just had. We also had never been home before post chemo, there was always some kind of complication or another. I was giving Jeremy anti-nausea meds; Ondansetron every 8 hours and Gravol every 4 hours. The next morning I went into Jeremy's room to give him his 6 o'clock Gravol and found him in  a pool of vomit and stool. I cleaned him up and put him back to bed. I kept telling myself that this was a normal side effect of the chemo. At 10 I fed him and he threw everything up all over the bed and the floor. I then changed his diaper and he pooped all over everything. People would probably say that I was being ignorant and missing the signs, but maybe I didn't want to see them. Maybe I knew in the back of my mind that something wasn't right, but I wanted so bad for everything to be okay.

Chloe reading to Jeremy on his play mat.

     Throughout the day I thought Jeremy looked pretty awful. He wasn't smiling (which is huge for him), not really moving, not eating much (which I attributed to the nausea) and his eyes were looking quite sunken in. Brent came home from work and immediately said that Jeremy looked terrible. I took a quick listen to him and found that his heart was racing at 184 beats per minute and his resp rate was up to 59 breathes per minute. I called Children's with my findings and they said to bring him into emerg right away. Brent brought him in and with bloodwork they soon found what I was suspecting, Jeremy was quite dehydrated. Infact he was severely dehydrated. I couldn`t believe how fast it had all happened! Just a day prior, we were at the hospital and Jeremy was doing amazing. I knew it took no time for things like this to happen to such a small body, but I was still in disbelief when I saw how fast it overtook Jeremy. They gave him a bolus of fluids, blood, and started him on morphine. They kept him on regular doses of Ondansetron and Gravol. The next day Jeremy was still quite gaggy and crying out a lot. They did an X-ray and saw large air pockets in Jeremy`s large intestine and it was really inflamed. This lead them to a diagnosis of neutropenic enterocolitis, also known as typhlitis. 

     Typhlitis is an infection in the large intestine that affects immunocompromised patients, such as those undergoing chemotherapy. In every person, there is intestinal flora in the bowels. This is usually not a problem as it stays confined within the walls of the intestines and is excreted when necessary. In a cancer patient, specifically one that is undergoing chemotherapy, the flora becomes harmful because there is no immune system to keep this bacteria away from healthy tissue. Because of their neutropenia, they cannot keep the bacteria at bay and it attacks the bowels. To treat this, they chose to stop giving anything by mouth, start on antibiotics, and do daily abdominal X-rays.

     By the 13th, four days later, Jeremy was looking and I`m sure, feeling much better. They started him on a continuous morphine infusion the day before. They also did an abdominal X-ray which showed them that the air pockets in his bowel had decreased significantly. Jeremy was so happy and squealing a lot, he was returning back to his normal self. They slowly weaned him off of the anti-nausea meds and Jeremy handled it well. By the 15th, Jeremy was off of the continuous morphine infusion and he was still smiling.

Chloe came for a surprise visit!!

 Jeremy`s back!! He is once again sporting his million dollar smile!!!!   

Chloe enjoying the big first snowfall!

 Chloe's first hair cut at nearly 29 months!!

 

What I would wake up to every morning at the hospital once Jeremy was feeling better.

Jeremy's play table and chair, he loved this thing!--the Bumbo didn't support him enough.

 Getting a smiley picture of the two of us :)

Chloe comes for another visit!! 

   

  By January 22nd, Jeremy was completely back to normal. We were discharged home and as soon as we got there, Jeremy wasted no time with picking up where he left off. As soon as I put him on his blanket on the floor, he grabbed his feet and started rolling everywhere! He wouldn't stop smiling and was very giggly! Man it was good to be home!

   

Happiest Holidays!-14

    On December 3rd the doctors were finally completely happy with Jeremy so we were discharged home. It was such a lovely feeling after four long months of being in the hospital (with the exception of the 9 days home in October) to finally go home! And what better time to go then at Christmas time? To top it off, Brent was still off work because we still didn't know what was going to be the outcome with Jeremy, so we also had some time to just be a family all together again!!

    

All ready to go home!

 The month of December was filled with goodness and happiness. We did a lot of fun family things and we also got an MRI done on the 6th which told us that everything looked great!! The new plan was to alternate between a round of ICE and a round of VAC. This meant that we would be alternating between an aggressive chemo and a "reduced" chemo and that the reduced chemo would give us more time to be home. So providing that Jeremy's counts were okay, he would start VAC the following Friday and would get it for the next three Fridays as an outpatient. And then three weeks after that he would get a round of ICE and it would carry on in this fashion. We had plenty to celebrate and be thankful for!! This was the best Christmas present ever!

Getting better acquainted with cousin Addison.

Go to Nana and Grampa's for dinner

Nana so excited to have all of her grandchildren together in one place!!

Oma gets her snuggles in before they leave for five months to go to Mexico

Totally chilled with aunty Tanya (she's so snuggly!)  

Buy our Christmas tree and decorate Gingerbread houses

Chloe coming in to give Jeremy a big smooch!

At the park

At the hospital for a round of VAC

Jeremy hamming it up with aunty Courtney

Go with the whole family (Brent's side) to Vandusen Gardens

Chloe gets her picture taken with her favorite character, the "Grunch"

Pictures with Santa. Couldn't get one with both of them smiling at the same time!

At the park again!

Christmas Eve at Nana and Grampas. Open some of the presents...

Toby gets a cuddle in early Christmas day

Opening presents on Christmas morning

Despite the fact that he can now easily roll over onto his back from his stomach, he still does NOT enjoy tummy time!

Watching tv in my bumbo

Morning snuggles in mom and dad's bed

Have cereal for the first time and aside from the fact that it totally makes me gag, I kinda like it!

I heart eggnogg!

Almost There!-13

     On November 1st we went home for a few hours, had dinner at home as a family and then headed back to the hospital. It seemed as though Jeremy was having an increase in breathing while we were at home, but he looked so comfortable, not in distress at all. When we got back it was apparent that Jeremy was working really hard to breathe, but as usual he remained calm and collected. They did a chest x-ray and lo and behold, there was another pneumothorax!!!! This one was still on his right lung, but because the upper and middle lobe were repaired and remained this way, the pneumo found its way to the bottom lower lobe. The doctors said it was really small so they thought that putting Jeremy on oxygen would correct things. He went on 2L of oxygen, Jeremy's breathing decreased and became less laboured. However by the next day, he was at a stand still, things were not improving. In went another chest tube. This time they put in what was called a pigtail catheter. It was put in by radiology and was much smaller and more supple, making it more tolerable.
     On November 2nd, a photography team came to the hospital to do a free family photo session. Brent and I jumped on this opportunity as we really wanted photos of our new family but never really came across a time when we weren't in the hospital. The timing couldn't have been better! That day Jeremy was tube free as they were trialling him on oxygen for the day. So for 45mins we had him tube free to get our photos done.

     On November 4th they did a colonoscopy and biopsy of healthy tissue and also of a red lesion in Jeremy's descending colon. The news was quite positive, the intestines looked much healthier and they were unable to locate the really large lesion/ulcer that was there in June! All this chemo was doing something! The plan was to continue with another round of ICE and then do an MRI the week of November 28th to determine what would come next.

Jeremy figuring out how to grab things with both hands.

     As for the chest tube, the plan was to keep it in for at least another two weeks. They really wanted the pneumothorax to resolve on its own. If it did not go on its own, the surgeon would inject talc into his pleural cavity via the pigtail catheter, hence the reason they put this one in this time because it was in a very precise position due to the fact that radiology inserted it. This talc would create a slurry in his pleural cavity that would cause irritation to the walls of his chest and cause a seal. It wasn't the best alternative just for the fact that it had a possibility of causing problems later on in Jeremy's life when the lung would need to grow and expand. Therefore, this plan was a definite alternative and would only come into effect if absolutely necessary.

Showing off his latest accessories

Another day at the park (Redwoods)

     So by this time, Jeremy had the chest tube for a total of  two months. This meant that although we held him, he spent most of his time on his back because it was the most comfortable position for him to be in. This meant that his physical development was lacking. He still hadn't found his feet at 5 months (this is something that usually occurs at about 2-3 months), he wasn't rolling over and he was getting a very pronounced flat head in the back. We got physio involved and although the positions were limited, we tried to keep him off the back of his head as much as possible. This meant a lot of side-lying which Jeremy found incredibly comfortable, so much so that it was a guarantee that he would fall asleep within 5 minutes once put on his side.

Our little poser!

Sitting in his physio chair, laughing it up. Jeremy really loves the sound of his voice and loves to laugh and "talk" with his mouth closed

Chloe and Jeremy checking each other out....so cute!

     The supple pigtail catheter was much more comfortable for Jeremy, at least it seemed as though he was tolerating it much better but it did not come without it's own headaches. Because the tubing was so thin and so supple it kept getting kinked. When this would happen Jeremy would scream out in pain and his heart rate and resp rate would go through the roof. The only way to fix this problem was to splint the tube. So with a make-shift splint out of a tongue depressor, Q-tips and tape the tube would be held in a flattened  position so it could no longer kink. This held until the end of the month of November. By that time, on the     29th the tube was once again clamped and everything looked groovy!!

     On December 2nd after an X-ray, they pulled out the chest tube. In the afternoon everything still looked great and Jeremy's lungs were holding up on their own!!!! After two long months of having a chest tube, he was finally tube free!!!!!