Nov. 24
Sunday
Home
It has been awhile since my last update and I am trying to commit to at least once a week, but these days I am falling behind :(
The biggest update is that on Thursday we were at Children's Hospital for a variety of important tests. A MRI, bone marrow aspiration and biopsy as well as lumbar puncture were done to you while under sedation. You did very well and woke up a little grumpy, but within 20 minutes you were in a good enough mood to go for an ultrasound. Your dad and I were so proud of you, you are such a little trooper. The purpose of these test results are to tell us that there are no more cancer cells, which would mean you were completely cancer free. We will get the results on Wednesday and the wait is killing us. I do play in my head only good news and pray for the results we want but I also know I need to be prepared for unexpected news. I don't actually know if I can be prepared for any other news then the fact that the cancer is gone. It has been a lot of sleepless nights between your dad and I, Wednesday cannot come fast enough. As well as the test results, you will also have Echo, EKG and chest x-Ray on Wednesday to finish off your tests.
I almost forgot but on Wednesday we will have a consultation with the surgeon who will hopefully remove your central line (Broviac). As long your results are good we can proceed with the removal of your Broviac. I honestly cannot wait and I pray that it can happen before Christmas. You are so limited in your activities and it keeps your dad and I on high alert no matter what you are doing. Your locks are becoming weak and therefore opening up regularly, even with them taped. With your Broviac removed we can finally take you swimming, skating and even have a bath.
At home you have been a bundle of energy, which is great....I think! We have really tried to get back to routine as well as expectations. You are having a difficult time with some expectations and have learned that consequences are not always easy to understand. We are coping and all adjusting.
I want you to know, you have many amazing people praying and cheering you on. This week we need all the prayers and positive thoughts as we get the long awaited results. No matter what we will continue to fight on with your army behind us.
Love you to the moon and back,
Mom
Sunday, November 24, 2013
Saturday, November 9, 2013
November 9th, 2013
Saturday
Home
I need to post a quick update to let you know that you are back at home. After receiving the news that your cultures were negative you were able to head home. So, you just had a fever, probably brought on by a cough that you developed last weekend. Something that would have been "normal" last fall, but must be addressed at the hospital now. We are happy that there was no infection and your counts have started to climb back up again this week.
We have stayed low key for most of the week just to make sure your cough didn't develop into anything else. With your counts being "high" for you we are going to try to go to Brooks and watch Abbi's first Ringette tournament. I am very nervous taking you away from Medicine Hat and your home, but we don't want to stay in your bubble forever. If anything happens we are only an hour away and there is a hospital in Brooks if we need it.
You tests have all been scheduled and will take place on Nov. 21 and 27. It is very hard being patient and waiting for these dates to get here. We just want to know the results so we can start the next chapter in this journey.
I will post some pics from the last month!
Love you to the moon and back,
Mom
Home
I need to post a quick update to let you know that you are back at home. After receiving the news that your cultures were negative you were able to head home. So, you just had a fever, probably brought on by a cough that you developed last weekend. Something that would have been "normal" last fall, but must be addressed at the hospital now. We are happy that there was no infection and your counts have started to climb back up again this week.
We have stayed low key for most of the week just to make sure your cough didn't develop into anything else. With your counts being "high" for you we are going to try to go to Brooks and watch Abbi's first Ringette tournament. I am very nervous taking you away from Medicine Hat and your home, but we don't want to stay in your bubble forever. If anything happens we are only an hour away and there is a hospital in Brooks if we need it.
You tests have all been scheduled and will take place on Nov. 21 and 27. It is very hard being patient and waiting for these dates to get here. We just want to know the results so we can start the next chapter in this journey.
I will post some pics from the last month!
Love you to the moon and back,
Mom
Monday, November 4, 2013
November 4th, 2013
Monday
MHRH / Home
Weight: 15 Kg
Nurses: Shelly / Shiela
We have had a great couple of weeks. We did not see your counts drop too low and we have been able to avoid any blood transfusions. You were able to enjoy Halloween and couldn't get enough of it. You ask everyday if we can go Trick or Treating again!
On early Sunday morning you developed a cough and had trouble breathing. We were able to get you breathing better with the humidifier and the next day you seemed back to your old self again. However, yesterday at around 3, I noticed you were warm and discovered a mild fever. We continued to monitor it and it did spike, which required a call to Oncology in Calgary and then an admit to Pediatrics in Medicine Hat. After your CBC, we noticed your WBC had dropped a bit since Thursday and therefore you needed to be put on antibiotics and then blood was taken to test for cultures. Your fever did break, later Sunday night and this morning you are full of energy. Your CBC this morning shows all your counts going up, which is a great sign. They are allowing a day pass, in between your antibiotics, so you can go home. This is good news because you eat and rest a lot better at home. We will have to wait until tomorrow night to get results back on your blood cultures. I am hoping that the fever was due to your cold, which would be just a normal thing for any healthy 3 year old boy, however with your immune system we needed to be admitted just in case and blood work done up.
We are so close to the end. Your dad and I were really hoping that we didn't need another hospital stay but hopefully your results will be negative and you can be in your own bed by tomorrow night.
Love Mom
MHRH / Home
Weight: 15 Kg
Nurses: Shelly / Shiela
We have had a great couple of weeks. We did not see your counts drop too low and we have been able to avoid any blood transfusions. You were able to enjoy Halloween and couldn't get enough of it. You ask everyday if we can go Trick or Treating again!
On early Sunday morning you developed a cough and had trouble breathing. We were able to get you breathing better with the humidifier and the next day you seemed back to your old self again. However, yesterday at around 3, I noticed you were warm and discovered a mild fever. We continued to monitor it and it did spike, which required a call to Oncology in Calgary and then an admit to Pediatrics in Medicine Hat. After your CBC, we noticed your WBC had dropped a bit since Thursday and therefore you needed to be put on antibiotics and then blood was taken to test for cultures. Your fever did break, later Sunday night and this morning you are full of energy. Your CBC this morning shows all your counts going up, which is a great sign. They are allowing a day pass, in between your antibiotics, so you can go home. This is good news because you eat and rest a lot better at home. We will have to wait until tomorrow night to get results back on your blood cultures. I am hoping that the fever was due to your cold, which would be just a normal thing for any healthy 3 year old boy, however with your immune system we needed to be admitted just in case and blood work done up.
We are so close to the end. Your dad and I were really hoping that we didn't need another hospital stay but hopefully your results will be negative and you can be in your own bed by tomorrow night.
Love Mom
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