Tuesday, May 31, 2011

Look Ma, No Vent!

This morning at 7am when I called to check up on Bronson I was excited to hear that they had been able to wean him off of the ventilator and, although he was still intubated, had him on CPAP settings on the ventilator. Basically, he was breathing by himself and not relying on the machines to take all the breaths for him anymore and he was just receiving a little bit of pressure and oxygen from the CPAP. Which is MUCH better than where is breathing was at just a week ago today. 

After sitting in two hours of traffic I finally arrived at the hospital at 11am...just in time for the health team rounds. As soon as I walked in Bronson's room I was told that Bronson had decided to take matters into his own hands. This morning after I had called and spoke with the nurse Bronson decided that he no longer wanted any tubes. The nurse heard a little cough and then a little cry and found that Bronson's breathing tube was half way out! I'm sure there was a little bit of panic at first but after some debate it was decided to leave the breathing tube out and see how he did with just a CPAP mask on. WOOHOO no more breathing tubes! I was so excited that his breathing had improved and I was hoping I would be able to hold him! In the past 22 days I have only been able to hold him once and today I finally got to hold him again! 

The nurse wanted to wait until the afternoon to let me hold him just to make sure Bronson was tolerating the change over to the CPAP... it was such a s...l...o...w morning but finally I got to hold my little boy! :) I'm really hoping that holding Bronson will be able to become a part of a regular routine for us!

The past couple of weeks have seemed to have dragged on and on while we waited for any good news in Bronson's health. I'm glad that this week we have finally begun to see some improvements! I really believe that his liver has shrunk significantly because of all the good results we're starting to see. Hopefully tomorrow he'll have a CT scan (depends on if they can fit him in or not) and we'll be able to see the difference in size. 

It seems to me that we have a very stubborn little boy who knows when it's time for his catheter and breathing tubes to come out! He's our little fighter! :)

Quick Update

Just thought I'd post a quick update!

Overnight Bronson was weaned off of his ventilator and is now on CPAP! He's still intubated but he's no longer relying on a machine to do all the breathing for him. He's breathing only with the CPAP and a little oxygen! That's a big change from a week ago when he was on a much much higher level of ventilation with an oscillator!

The fact that his output is still really good, and, now his improvement with the breathing I think it must be a sign that his liver is shrinking! The main reason he had breathing and output issues was because the liver was so big and was putting so much pressure upwards on the lungs and downwards on the kidneys and ureters. Nobody has told us that his liver has shrunk but from the last few days of small improvements here and there the liver must be shrinking!

He's supposed to be scheduled for a CT scan sometime this week so we're waiting to hear when it is and then we will know for sure whether or not the liver has shrunk.

Now off to the hospital I go!

Monday, May 30, 2011

The little things count

I've had people say to me, "I don't know how you're getting through and dealing with all that's going on right now". I honestly don't know how I would be able to get through this situation if I didn't have my faith. Yes, there are many times I wonder how I am going to find the strength to get through the day but those are the times that I have to remind myself that God will get us through. Whether or not it's the outcome we've been praying and hoping for - He will get us through it. 

This morning when I got to the hospital I found out that Bronson's white blood cell count was finally up a little bit! For about the past two weeks it's been anywhere from 0.1-0.6 and today it was up to 1.5. I am praying it continues to go up and recover to what it should be. This might be a very very small thing to get excited about but it made my day! Not to mention the fact that his kidneys still seem to be doing better and he's still losing fluid. We still don't know whether or not his liver has begun to shrink but we should hopefully hear tomorrow or the next day about that. 

I was talking to one of the members of the health care team caring for Bronson and I mentioned that I thought it was great news about his kidneys and WBC count and her response was, "But he is still a very sick boy so don't get too excited yet". Yes, I know he is still very sick and critical; still has an infection; still has tumors in bilateral adrenal glands, liver and lymph nodes; still has a breathing tube; and still has fluid retention but if I don't focus on the positives, regardless of how small they may be, how am I ever supposed to get through each day? If I only focus on how his health looks on paper I don't know if I would be able to make it through all of this. So, yes, I will take any little bit of positive news and I will get as excited as I want about it! 

Looking back to four years ago I don't know how I would have made it through dealing with Jon's cancer if I didn't rely on God. Three months to the day before our wedding Jon was diagnosed with stage 3b cancer. The first day that he was in the hospital receiving his first round of chemo I was at school writing one of my final nursing exams on cancer...go figure. That was the hardest exam I have ever had to write. We were told that Jon would have to undergo at least four rounds of chemo followed by radiation and then surgery. Jon had a 17cm tumor between his lungs and heart. If we had have only focused on how his health looked on paper I'm sure we would have felt defeated. But, we trusted in God to give us strength and get us through it. Three rounds of chemo later the doctors said all of the cancer was gone. Jon may have lost all of his hair and was bald for our wedding but we didn't have to postpone it. No radiation or surgery needed. Three and a half years later he is still cancer free!

As impossible as a situation may look I know from experience that things will be alright if we trust God. Without the strength I find from reading the bible and praying I honestly don't know how I would make it through this. 

I will not let other people tell me that my baby is not going to make it through this. I will not listen to what the papers or statistics say. I will do anything and everything in my power to see my baby come home with me one day soon. 

"Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."  - Isaiah 40:31

Saturday, May 28, 2011

A Birthday Wish

Priorities are a funny thing. They seem to change as you go through each stage of life. Today is my 26th birthday and I spent it up at the hospital with my little Bronson. Two years ago for my birthday I'm sure all I wanted were shoes and clothes, last year I wanted a jogging stroller, and this year all I wanted for my birthday was for Bronson to be cancer free and home with us. I really don't care that I spent my birthday at the hospital all day today because I was lucky enough to be able to see my little guy be the most alert and awake he's been since he was a couple days old. Being able to look into his eyes and have him look back at me was the best feeling ever. Even though I still can't hold him I can touch him and, today, see his eyes open and looking around at everything.

I may not have got my birthday wish for Bronson to be cancer free or home with us but he did make some progress today! Over night Bronson started losing a lot of the fluid he's been retaining! This morning the nurse saw him kicking like mad at something and by the time she got to him he somehow wrapped his foot or toes around his catheter and pulled it out himself! I guess he had enough of it! The good news is that so far he hasn't had any problems peeing! In fact he had such good output  today that now they're watching that he doesn't lose too much fluid all at once because that could cause other problems! Bronson seems to have a mind of his own and do things all or nothing!

The nephrologist and oncologist came by to see Bronson today and seemed to be pretty happy with how he was doing. His breathing was a little bit better and the respiratory therapist was planning to start weaning him off the ventilation support a little bit at a time. He still has an infection and his WBC count is still VERY low so we still need that to get better... and soon!

At the beginning of Bronson's stay in the NICU he received his very first hair cut, compliments of the NICU nurses. It's not the most fashionable haircut because the nurse was more concerned about getting a spot for an IV than what it looked like so it's a little patchy! However, due to his chemo he started losing some of his hair yesterday. It might be a big deal to some people that their child's hair is falling out but I figure it's better to be bald everywhere than have small patches of hair missing! At least his hair will all grow back evenly and he won't have a mullet! :)

I still can't get over what a great feeling it was to see Bronson awake and alert for so long today. I usually talk to him throughout the day but his eyes are always closed. Being able to see his eyes and interact a little more with him made my day more special. I love my little boy so much and I can't wait for the day to be able to leave the hospital with a car seat carrying Bronson.

All said and done it was a good day! :)

Friday, May 27, 2011

What if...

Today was Bronson's due date. I have found myself wondering numerous times, what if he didn't decide to make his appearance 2.5 weeks early? Would we be in a worse situation? Would things have been the same? If he was in utero for those extra 2 weeks would the cancer have spread even more? Why did his liver all of a sudden start increasing in size so drastically a few days after birth?

I've asked the oncologists these questions and they aren't sure what would have happened had he been born at 40 weeks instead of 37.5 weeks. The head oncologist told me that #1) there have been so few cases this like that there just isn't enough information to compare it to, and #2) there's no research to prove this, but, he thought that at birth some sort of hormone was released that triggered the liver to start growing in size and all of a sudden caused some major problems. There are so many questions I have and so many "what if's" that I think I would lose my mind if I chose to dwell on them all. I am choosing to believe that God's timing for Bronson to come into this world was perfect. His problems at birth are definitely not what a parent wishes for but since we don't know the answers to the "what if's" we have to accept that the way things happened were for the better.

Bronson is now 18 days old. I can't believe 18 days have passed already but, at the same time, it feels like months have passed by. Bronson did make a little bit of a turn in the right direction over night. First of all, he still has an E. Coli infection which is still very serious but he is still not showing any symptoms of it getting worse. He has received numerous blood products and transfusions since he's been born and today some of his blood counts were the highest they've been in a while! His white blood cell count is still VERY low and that's the one we really need to start going up. If his WBC count doesn't start to go up we may have some major problems in terms of his infection getting worse and also having his next round of chemo, currently scheduled for next weekend, postponed until they do go up. Some of Bronson's diuretic medications were changed around and he is still peeing ok which is exciting! He's had problems with peeing since he's been born so we get very excited about his output and peeing! Bronson has started to have a little bit of a low blood pressure which is related to the infection he has and because he is getting rid of some intravascular fluid instead of getting rid of all the fluid in his cells which is making him so puffy and swollen. Instead of continuing to rise, like they have been, his jaundice levels were actually down a little bit today as well! We won't know until Monday if his liver has begun to shrink or not from the chemo and radiation but the team seems to think the radiation should have made a difference. It may not sound like his health status is very different but the fact that some of his blood work and other tests came back a tiny bit better than what they've been is encouraging.

Bronson is our little miracle. Even though he has stage 4S bilateral adrenal neuroblastoma we are choosing to look at the positives of the situation and not all the "what if's". We have our good days and our bad days but I'm pretty sure that's normal in any situation like this.  I know without a doubt that if we did not have as many people praying and supporting us as we do neither of us would have the strength to get through this situation. So thank you to everyone who has been praying for us we greatly appreciate your prayers and need them to get through each day!

Thursday, May 26, 2011

Ugh, Infections

I'm so exhausted tonight. I feel drained. Driving downtown today to the hospital I had a hard time keeping my eyes open and it was only 9am. You know it's going to be a long day if at 9am you already can't keep yourself awake! So sorry if this post doesn't make sense or is all over the place because my mind is going in a thousand different directions tonight.

Today was Bronson's 3rd and final dose of radiation. He's scheduled for an abdominal ultrasound tomorrow and then again on Monday. The Dr. and team said they expect to see quite a difference in liver size from the one tomorrow to Monday's. I hope they're right! We need some good news really soon.

We found out today that Bronson is septic with an E. Coli infection. Go figure just what we've been hoping and praying wouldn't happen... an infection. He literally has no white blood cell count and an infection right now is very serious because he has nothing to fight it with. He was started on antibiotics yesterday when they first suspected it and then had other ones started today. So we're praying that his white blood cell count all of a sudden increases (he's already on medication to stimulate the production of WBC's), the antibiotics work and the infection goes away. It feels like it's just one thing after another. It's so frustrating. On the bright side, yesterday he started losing fluid! I think in the last 36ish hours he's lost somewhere around 300grams. It may not sound like a lot but it's progress! Now the problem is that his electrolytes are all out of whack because some of the fluid loss was out of his veins and not enough fluid loss interstitially. But at least he's headed in the right direction for fluid loss.

As much as I want to be up at the hospital every waking moment I can it's also nice to be home. Since Bronson has been born I haven't had the opportunity to spend very much time with my daughter. I miss her every day when I'm at the hospital and at night when I'm home with her I miss my little Bronson. It's hard going back and forth back and forth but it can't be forever, right?

Yesterday as I was sitting beside Bronson all of a sudden a bible verse came to my mind. Romans 8:37, "In all things we are more than conquerors through him who loved us." I smiled to myself as I thought of that verse because Bronson will be a conqueror of this cancer. Bronson will beat the odds. That's what I'm believing to happen.

Wednesday, May 25, 2011

Our Story So far...

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!
Related Posts Plugin for WordPress, Blogger...