Thursday, September 27th, 2018
Post-op Day 7:
- last of IV meds today so Addie's IV port was finally removed. (she is officially down to only bandages!)
- dressing change again (still looking good; a little puffy in the middle but doctors aren't worried as there is no fever or redness)
- spent time in the playroom, had PT and climbed a few steps for the first time, visited with nurse Angela to gather her bravery beads for this year, played UNO with mom (although I think we messed up the rules as the game seemed to go on forever & ever); all in all a good day until around 11:30 pm
- 11:30 pm - 1 am (ugh!) Addie could not sleep. She wasn't exactly in pain but the backs of her knees and hips were bugging her
Post-op Day 8:
- second day with no morphine during the day
- started the day well even with the lack of sleep
- had weird incident during art therapy...her hips started to ache and feel heavy pressure then the room got bright; she returned to her room to lie down and have some medicine. Addie's blood pressure was very low even for her (71/38) so this was likely the cause
- after her nap, the rest of the day was really good; more art, walk to Starbucks, finished adding to her bravery beads, even washed her hair with the weirdest shower cap
- plan is to be discharged tomorrow and head back to RMHBC for a night or two...almost home!
- last of IV meds today so Addie's IV port was finally removed. (she is officially down to only bandages!)
- dressing change again (still looking good; a little puffy in the middle but doctors aren't worried as there is no fever or redness)
- spent time in the playroom, had PT and climbed a few steps for the first time, visited with nurse Angela to gather her bravery beads for this year, played UNO with mom (although I think we messed up the rules as the game seemed to go on forever & ever); all in all a good day until around 11:30 pm
- 11:30 pm - 1 am (ugh!) Addie could not sleep. She wasn't exactly in pain but the backs of her knees and hips were bugging her
Post-op Day 8:
- second day with no morphine during the day
- started the day well even with the lack of sleep
- had weird incident during art therapy...her hips started to ache and feel heavy pressure then the room got bright; she returned to her room to lie down and have some medicine. Addie's blood pressure was very low even for her (71/38) so this was likely the cause
- after her nap, the rest of the day was really good; more art, walk to Starbucks, finished adding to her bravery beads, even washed her hair with the weirdest shower cap
- plan is to be discharged tomorrow and head back to RMHBC for a night or two...almost home!
Wednesday, September 26th, 2018
Post-op Day 5: Not great. Lots of progress with mobility but pain still not controlled :( On an oddly positive note, her surgeon dropped in to check on her right when she was at the peak of pain. He made some adjustments to her pain regime that should hopefully help.
Post-op Day 6: Still a crappy night but the day was great. I'm guessing that it was the IV Ketorolac her surgeon ordered for the next 48 hours. Addie was up moving first thing in the morning, brushed her teeth, went to art therapy, visited Starbucks & the gift shop (via wheelchair), and she didn't drift in/out of sleep all day. Fingers-crossed tomorrow is just as good. Downside to all this, IV meds means we won't be heading home until her pain can be controlled orally. Willing to spend a few more days in hospital to see her fairly comfortable
Post-op Day 6: Still a crappy night but the day was great. I'm guessing that it was the IV Ketorolac her surgeon ordered for the next 48 hours. Addie was up moving first thing in the morning, brushed her teeth, went to art therapy, visited Starbucks & the gift shop (via wheelchair), and she didn't drift in/out of sleep all day. Fingers-crossed tomorrow is just as good. Downside to all this, IV meds means we won't be heading home until her pain can be controlled orally. Willing to spend a few more days in hospital to see her fairly comfortable
Sunday, September 23rd, 2018
Post-op Day 3:
- no real change in pain/achiness 😞
- Foley catheter out (woohoo!)
- low grade fever so no warm blankets (boo!)
Post-op Day 4:
- visit from Auntie & Uncle (huge thank you for the amazing gift!)
- untethered from IV stand for most of the day (another woohoo!)
- getting up to use the bathroom & walked across room👍
- dressing change (looking good!)
- pain/achiness seemed a little worse today (likely because they are trying to get her off the IV morphine & on to oral meds) 😢
- no real change in pain/achiness 😞
- Foley catheter out (woohoo!)
- low grade fever so no warm blankets (boo!)
Post-op Day 4:
- visit from Auntie & Uncle (huge thank you for the amazing gift!)
- untethered from IV stand for most of the day (another woohoo!)
- getting up to use the bathroom & walked across room👍
- dressing change (looking good!)
- pain/achiness seemed a little worse today (likely because they are trying to get her off the IV morphine & on to oral meds) 😢
Friday, September 21, 2018
Post-op Day 1:
- achy & sleepy (no surprise there)
- horribly painful arm of all things; nurse figures one of her upper arm veins failed overnight and leaked meds/fluids into her interstitial tissue; switched IV arms, heat & elevation eventually solved the problem
- forced to lay flat on back from yesterday until 12 pm today due to dura mater tear during surgery (this is the membrane that surrounds the spinal cord)
- visit from Molly, the therapy dog (so cute!)
- visit from Vancouver Whitecaps (I think Dad appreciated this one more than anyone)
- upchuck incident x1; this led to very painful lower back spasm (thank goodness for morphine infusions)
- all in all, a decent day by the time I left
- unfortunately, she had a terrible night; the doctors attempted to wean her off the morphine & onto drugs with fewer side effects; this did not go well (it was Dad's night...sorry honey) Post-op Day 2:
- still achy and very, very sleepy due to previous bad night
- upchuck incident x1
- today's accomplishments included: eating, having her bed raised, laying on her side, momentarily sitting & standing with physio's help, getting Netflix to work on her tablet so she can binge watch Stranger Things
- achy & sleepy (no surprise there)
- horribly painful arm of all things; nurse figures one of her upper arm veins failed overnight and leaked meds/fluids into her interstitial tissue; switched IV arms, heat & elevation eventually solved the problem
- forced to lay flat on back from yesterday until 12 pm today due to dura mater tear during surgery (this is the membrane that surrounds the spinal cord)
- visit from Molly, the therapy dog (so cute!)
- visit from Vancouver Whitecaps (I think Dad appreciated this one more than anyone)
- upchuck incident x1; this led to very painful lower back spasm (thank goodness for morphine infusions)
- all in all, a decent day by the time I left
- unfortunately, she had a terrible night; the doctors attempted to wean her off the morphine & onto drugs with fewer side effects; this did not go well (it was Dad's night...sorry honey) Post-op Day 2:
- still achy and very, very sleepy due to previous bad night
- upchuck incident x1
- today's accomplishments included: eating, having her bed raised, laying on her side, momentarily sitting & standing with physio's help, getting Netflix to work on her tablet so she can binge watch Stranger Things
Thursday, september 20, 2018
Great News! Addie had her surgery yesterday and soon after her doctor informed us they could not find any tumour. He was apologetic in a way since all scans and procedures seemed to point to a tumour. We are just thrilled they found nothing. He told us that one of the other doctors said "OK nothings here so let's stitch her back up". He told them "no", because he wanted to make sure beyond a doubt nothing was hiding along her spine, so he spent some time checking everywhere. And the surgery was not for nothing as they were able to repair Addie's back hardware she had put out of wack with a fall two years ago. And that surgery would eventually have to get done. They also extended her rods up and down an extra vertebrae.
So the obvious question he expected from us was; "So what was it?, What did we all see?" To this he did not have a definite answer but suggested scar tissue, or a build up of fluid that was released when they cut into her. He did say that some of that fluid was collected and sent to the labs to check. Should get these results later.
For those of you who have been sending healing thoughts and prayers this could be nothing more than a miracle! Hey, you never know as I was lucky enough to be a part of a water healing ceremony with an elder from the Penticton Indian Band just last week and prayed for the tumour to go away. So whatever the reason, scientific or otherwise, Jenn and I have had a huge weight taken off our backs and are so thankful to all of you and to Children's hospital once again for all the support and care.
Addie is now recovering at Children's so any post recovery healing thoughts/prayers would be much appreciated for both Addie and her family. It has been quite the roller coaster ride! I will keep updating you all through this site as Addie recovers.
Love from all of us to all of you.
So the obvious question he expected from us was; "So what was it?, What did we all see?" To this he did not have a definite answer but suggested scar tissue, or a build up of fluid that was released when they cut into her. He did say that some of that fluid was collected and sent to the labs to check. Should get these results later.
For those of you who have been sending healing thoughts and prayers this could be nothing more than a miracle! Hey, you never know as I was lucky enough to be a part of a water healing ceremony with an elder from the Penticton Indian Band just last week and prayed for the tumour to go away. So whatever the reason, scientific or otherwise, Jenn and I have had a huge weight taken off our backs and are so thankful to all of you and to Children's hospital once again for all the support and care.
Addie is now recovering at Children's so any post recovery healing thoughts/prayers would be much appreciated for both Addie and her family. It has been quite the roller coaster ride! I will keep updating you all through this site as Addie recovers.
Love from all of us to all of you.
Wednesday, September 19th, 2018 6:48pm
She's out! Took a little over 7 hours. Her loose hardware was replaced, fluid collections were drained, alignment corrected, and rods extended to hopefully better support her fusion. However, once in there, the surgeon found no tumour. That's right...NO tumour. He's not sure what they were all seeing on the imaging (remember the glowing white mass) but his best guess is some sort of inflammatory response. She needed the surgery regardless to fix the hardware issues. So now, we can only hope that it was the fluid or misalignment that was causing her pain. Huge thank you to everyone for your support once again! I'll read all your wonderful words to Add when she's up for it.
September 19 at 3:43 PM
Wednesday, September 19th, 2018 3:43pm
Closing in on 7 hours and still waiting.
Wednesday, September 19th, 2018 8:29am
Almost time. If you count her CVC, g-tube, and embolization operations, this will be Addison's 10th surgery. You'd think it would get easier but it doesn't.
Monday, September 10th, 2018
So we are a week away from Addie's surgery (Wednesday, September 19th). Here is Jenn's post from Addie pre-op day at Children's on Thursday last week:
"Pre-op appointments started at 8 am with spinal x-ray and followed by a pulmonary function test, an echo cardiogram, then blood and urine. We had consults with her orthopedic nurse, surgeon, and anesthesiologist. It was a successful day with no hold-ups or surprises. We were out of there by 2 pm.
The surgery is a go for the 19th. Her surgeon will remove her fusion hardware (screws and plate; he'll try to work around the titanium cage) then perform a revision surgery of the laminectomy/decompression to remove what is believed to be a tumour (recurrent hemangioma) in her spinal canal followed by thoracolumbar spinal instrumentation and fusion...whew, quite the mouthful. It is likely to take 6 hours but could reach 10 hours as it did last time. Dr. Miyanji really won't know what exactly he's dealing with nor how long the surgery will take until he's actually in there but has mentioned that her L3 vertebrae has shifted out of alignment so he's planning on extending her fusion plate to the L4. Biggest concerns will be: 1. Infection (apparently there is a 6-9% chance of infection with a revision surgery) 2. Blood loss 3. Damage to the spinal cord...nothing to worry about, right?!?"
Continued thoughts and prayers are much appreciated. Currently Jenn is on medical/stress leave from work (go figure) so any thoughts and prayers her way would be appreciated as well.
Sincerely
Chris
"Pre-op appointments started at 8 am with spinal x-ray and followed by a pulmonary function test, an echo cardiogram, then blood and urine. We had consults with her orthopedic nurse, surgeon, and anesthesiologist. It was a successful day with no hold-ups or surprises. We were out of there by 2 pm.
The surgery is a go for the 19th. Her surgeon will remove her fusion hardware (screws and plate; he'll try to work around the titanium cage) then perform a revision surgery of the laminectomy/decompression to remove what is believed to be a tumour (recurrent hemangioma) in her spinal canal followed by thoracolumbar spinal instrumentation and fusion...whew, quite the mouthful. It is likely to take 6 hours but could reach 10 hours as it did last time. Dr. Miyanji really won't know what exactly he's dealing with nor how long the surgery will take until he's actually in there but has mentioned that her L3 vertebrae has shifted out of alignment so he's planning on extending her fusion plate to the L4. Biggest concerns will be: 1. Infection (apparently there is a 6-9% chance of infection with a revision surgery) 2. Blood loss 3. Damage to the spinal cord...nothing to worry about, right?!?"
Continued thoughts and prayers are much appreciated. Currently Jenn is on medical/stress leave from work (go figure) so any thoughts and prayers her way would be appreciated as well.
Sincerely
Chris
Thursday, September 6th
Drove down after school yesterday for pre-op appointments today. We are a go for the 19th. Someone is rather sad about the recovery restrictions (no P.E. for the year, no backpack, no stairs...Christopher, I have yet to tell you about the loss of your den, and a crap-load of other "no's" for the first 3-4 months). There were tears. I think she's just tired of all this but is off playing now. Thank goodness for RMHBC. Heading home tomorrow.
July 31st, 2018
Just after the last update, Addie decided that she wanted the surgery pushed up as she did not like having the discomfort for that long. Unfortunately, after many messages back and forth with children's, they were unable to fulfill her wish (probably due to the number of emergent cases they have had over the summer).
Today we learnt that Addie's surgery will be on Wednesday, September 19th. She will also have a pre-op day of testing and meetings a couple of weeks before on Thursday, September 6th. She will have the opportunity to meet with her surgeons and ask any questions she has. This did not happen the last time she had surgery because it was an emergency situation.
I guess the only silver lining to all of this is that Addie's surgeon does not think she is in a severe enough state and that she can wait another month and a half fir surgery. She continues to need meds at night to sleep and is having s gradual increase in symptoms, such as pins and needles and numbness in her in her feet and hips. Please continue to send positive thoughts and prayers her way so that these symptoms will not affect her daily enjoyment of life and that the planning stages and ultimately the surgery itself will go smoothly.
We will keep you posted if there are any changes over the coming weeks. Jenn and I and Addie want to thank you all for your continued support.
Today we learnt that Addie's surgery will be on Wednesday, September 19th. She will also have a pre-op day of testing and meetings a couple of weeks before on Thursday, September 6th. She will have the opportunity to meet with her surgeons and ask any questions she has. This did not happen the last time she had surgery because it was an emergency situation.
I guess the only silver lining to all of this is that Addie's surgeon does not think she is in a severe enough state and that she can wait another month and a half fir surgery. She continues to need meds at night to sleep and is having s gradual increase in symptoms, such as pins and needles and numbness in her in her feet and hips. Please continue to send positive thoughts and prayers her way so that these symptoms will not affect her daily enjoyment of life and that the planning stages and ultimately the surgery itself will go smoothly.
We will keep you posted if there are any changes over the coming weeks. Jenn and I and Addie want to thank you all for your continued support.
July 7th, 2018
Hello To All!
I was hopeful that I would not have to write about Addie's health again on this website, but alas the universe has thrown us another curve ball. Approximately 4 months ago, Addie started complaining about a sore hip. At first, Jenn and I were hopeful, sad as it may sound, she had fallen while figure skating or injured it while doing some other physical activity. But, after a few weeks, we knew something was up. We began calling her doctors and they arranged for an x-ray to be completed. Unfortunately, the x-ray photos came back normal. Unfortunate, for if you are a parent of a child with cancer in their history, x-rays often are unable to see it. The next step was an appointment with her pediatrician who examined her and decided more scans were needed. Addie's oncologist also requested that an MIBG (nuclear scan used to detect Addie's original cancer, Neuroblastoma, be completed). So down to Children's hospital Mom and Addie went for CT, MIBG, and MRI scans.
A week had passed and we still had not heard any results, so we inquired with firmness, since Addie's pain had gotten worse with us having to provide Tylenol and Advil to get her to sleep at night. Then we received the concerning news. The scans revealed two things. One was a growth like mass near her original Benign Tumour mass on her L2 vertebrae. The other was a small glowing mass at the end of her hardware. The second mass showed up on the MIBG so fear of her cancer's return rose. So down to Children's Addie went again for more scans (including a PET).
So, the good news and bad news scenario followed . . . The good news was that the glowing spot shown on the MIBG scan was shown to be a false positive! At this news we were able to breathe again as no child to our knowledge has survived recurrent Neuroblastoma. The bad news was that indeed Addie had an Hemangioma (benign tumour) on her L2 vertebrae.
We found out by piecing information together that Addie did not have her entire vertebrae removed years ago, but rather the original tumour was scooped out and that portion of her vertebrae was replaced with a cage. So obviously a piece of the tumour remained and has grown these past number of years, and only now, as it is pressing on Addie's spinal cord, is she feeling it.
We were then informed that we would not see Dr. Miyanji until June 23rd, Jenn and I were not happy with this so we called and asked firmly to see him right away. Fortunately they obliged and we raced down. At that meeting (yesterday), we were provided with pictures of the scan (see below) showing the tumour's growth and where it was situated. We were also told that surgery would be needed to remove it.
Over the course of the meeting two plans emerged and Dr. Miyanji was awesome in the way he included the most important person in the room, Addie, in the decision making process:
PLAN A: Addie will have the surgery after her summer holidays in early September. This will allow Addie to avoid surgery right away and the healing process that follows which as shown in her earlier journey requires restrictions on activities.
PLAN B: Addie will have surgery at the end of the month. This will still allow Addie to participate in her two biggest summer events; camping with friends at Gallagher Lake in Oliver, and attending Camp Goodtimes (camp for kids with and who have survived cancer).
Ultimately it is up to Addie as she is the one to go through with it. She shares her parent's concerns that we have about leaving the tumour in there until September, but Dr. Miyanji assures us that 4 more weeks would not have a major impact as the tumour is much smaller than her original mass.
So now we wait for Addie's decision . . .
Thank-you to all of you for your ongoing thoughts and prayers, which have been answered in that Addie's cancer has not returned in close to 11 years. But, continued healing thoughts and prayers are obviously welcome from all of you, for both Addie's decision and for the surgery and healing to follow.
Blessings
Image 1: Side view of Addie showing arrow pointing to bright mass behind L2 vertebrae.
Image 2: Top down view showing oval around bright mass towards her back and below spinal cord (black).
Image 3: Online picture of hemangioma corrupting a vertebrae.
I was hopeful that I would not have to write about Addie's health again on this website, but alas the universe has thrown us another curve ball. Approximately 4 months ago, Addie started complaining about a sore hip. At first, Jenn and I were hopeful, sad as it may sound, she had fallen while figure skating or injured it while doing some other physical activity. But, after a few weeks, we knew something was up. We began calling her doctors and they arranged for an x-ray to be completed. Unfortunately, the x-ray photos came back normal. Unfortunate, for if you are a parent of a child with cancer in their history, x-rays often are unable to see it. The next step was an appointment with her pediatrician who examined her and decided more scans were needed. Addie's oncologist also requested that an MIBG (nuclear scan used to detect Addie's original cancer, Neuroblastoma, be completed). So down to Children's hospital Mom and Addie went for CT, MIBG, and MRI scans.
A week had passed and we still had not heard any results, so we inquired with firmness, since Addie's pain had gotten worse with us having to provide Tylenol and Advil to get her to sleep at night. Then we received the concerning news. The scans revealed two things. One was a growth like mass near her original Benign Tumour mass on her L2 vertebrae. The other was a small glowing mass at the end of her hardware. The second mass showed up on the MIBG so fear of her cancer's return rose. So down to Children's Addie went again for more scans (including a PET).
So, the good news and bad news scenario followed . . . The good news was that the glowing spot shown on the MIBG scan was shown to be a false positive! At this news we were able to breathe again as no child to our knowledge has survived recurrent Neuroblastoma. The bad news was that indeed Addie had an Hemangioma (benign tumour) on her L2 vertebrae.
We found out by piecing information together that Addie did not have her entire vertebrae removed years ago, but rather the original tumour was scooped out and that portion of her vertebrae was replaced with a cage. So obviously a piece of the tumour remained and has grown these past number of years, and only now, as it is pressing on Addie's spinal cord, is she feeling it.
We were then informed that we would not see Dr. Miyanji until June 23rd, Jenn and I were not happy with this so we called and asked firmly to see him right away. Fortunately they obliged and we raced down. At that meeting (yesterday), we were provided with pictures of the scan (see below) showing the tumour's growth and where it was situated. We were also told that surgery would be needed to remove it.
Over the course of the meeting two plans emerged and Dr. Miyanji was awesome in the way he included the most important person in the room, Addie, in the decision making process:
PLAN A: Addie will have the surgery after her summer holidays in early September. This will allow Addie to avoid surgery right away and the healing process that follows which as shown in her earlier journey requires restrictions on activities.
PLAN B: Addie will have surgery at the end of the month. This will still allow Addie to participate in her two biggest summer events; camping with friends at Gallagher Lake in Oliver, and attending Camp Goodtimes (camp for kids with and who have survived cancer).
Ultimately it is up to Addie as she is the one to go through with it. She shares her parent's concerns that we have about leaving the tumour in there until September, but Dr. Miyanji assures us that 4 more weeks would not have a major impact as the tumour is much smaller than her original mass.
So now we wait for Addie's decision . . .
Thank-you to all of you for your ongoing thoughts and prayers, which have been answered in that Addie's cancer has not returned in close to 11 years. But, continued healing thoughts and prayers are obviously welcome from all of you, for both Addie's decision and for the surgery and healing to follow.
Blessings
Image 1: Side view of Addie showing arrow pointing to bright mass behind L2 vertebrae.
Image 2: Top down view showing oval around bright mass towards her back and below spinal cord (black).
Image 3: Online picture of hemangioma corrupting a vertebrae.
Summer 2016
Hello To All!
Since November of last year Addie has improved immensely and earlier this year was given the green light for all activities, even skiing! She is scheduled for her annual Oncology check-up next week and we are hoping for continued good news. As you all know, Addie has gone through more in her short life than many of us will experience, so Jenn & I are hoping for a long if not permanent, no-scare break! Thank you for all your continued thoughts and prayers!
Since November of last year Addie has improved immensely and earlier this year was given the green light for all activities, even skiing! She is scheduled for her annual Oncology check-up next week and we are hoping for continued good news. As you all know, Addie has gone through more in her short life than many of us will experience, so Jenn & I are hoping for a long if not permanent, no-scare break! Thank you for all your continued thoughts and prayers!
September - November
So sorry to all of you who have been wondering about how Addie is doing these past couple of months, but suffice to say the adage "no news is good nes" reigns true in Addie's case as well! Since her August appointment we have travelled to Edmonton through Jasper, started a new school year and have just gotten over the sugar rush that is Halloween with flying colours. In terms of hospital visits, Addie went down in September and got good results from her Orthopaedic surgeon who said that the scans she completed showed no more movement by her cage and that Addie was good to go for non jarring activities like swimming. She was so excited! So far the school year has gone well and she is enjoying her classes! A big thanks to all the amazing teachers, administrators and support staff at Uplands elementary who have been amazing to Addie! And thanks again to all of you for your continued thoughts and prayers for our little trooper. If could throw a thought and a prayer towards the man (or woman) upstairs to give us a break from all the scares for a while (like 50 years) that would be awesome!! Blessings!
Tuesday & Wednesday, August 11th & 12th, 2015
Mom & Addie head home today with some good news and bad news, the good news is Addie is allowed to take a trip to see her cousins but the bad news is her cage has slipped forward.
Jenn's facebook post:
So, the doctor's appointment did not go as well as we would have hoped. He said she's doing okay but the metal cage has tipped & he's concerned if it tips any more then Addie might need a brace or worse, surgery to correct the misalignment. Ugh. This means Dr. Miyanji will not give the go ahead for any new activities (except bathing) & in fact, he wants us to eliminate anything that is causing her to slouch or curl up...no playing on the floor, sleeping on her side, etc.. We have to watch her constantly now to ensure she maintains a proper posture. Follow-up in another 6 weeks as well. Addie is pretty sad & shed a few tears over the whole thing. Sigh. However, on a positive note, we are now allowed to take her camping...in an RV, of course.
Jenn's facebook post:
So, the doctor's appointment did not go as well as we would have hoped. He said she's doing okay but the metal cage has tipped & he's concerned if it tips any more then Addie might need a brace or worse, surgery to correct the misalignment. Ugh. This means Dr. Miyanji will not give the go ahead for any new activities (except bathing) & in fact, he wants us to eliminate anything that is causing her to slouch or curl up...no playing on the floor, sleeping on her side, etc.. We have to watch her constantly now to ensure she maintains a proper posture. Follow-up in another 6 weeks as well. Addie is pretty sad & shed a few tears over the whole thing. Sigh. However, on a positive note, we are now allowed to take her camping...in an RV, of course.
While in Vancouver Addie had fun spending time with her cousin Jessica and her Grandma at Ronald McDonald House, as well as some some special visitors to Children's Hospital! Continued thoughts and prayers for Addie's recovery would be much appreciated!
Monday, August 10th, 2015
Addie and Mom just left for the coast in time for Addie's big post-op check-up with her back surgeon tomorrow. We are hoping and praying for great results from her scans/x-rays so that she can be given the thumbs up to vist her cousins in Edmonton later this month. Thanks again to all of you for your constant love and support for our precious daughter!! Will keep you posted in regards to her results!
Monday - Sunday - July 27th - August 9th, 2015
Addie started these past couple of weeks with a little bit of pain and had to be put back on one of her meds. We think she was overdoing it and have encouraged her to take it easy. The past week has gone much better and she was taken back off her meds. With her check-up coming up we're hoping for great results!
Monday - sunday - july 20th - 26th, 2015
Addie is doing great and is adjusting to life with borders! As an adult it is hard for me to understand why anyone would not like to just kick back and relax, but for a ten year old who loves dancing, jumping, and running, limitations can be hard. Like any sibling, Addie continues to get frustrated with her little sister and big brother and they all need to be reminded that pushing and kicking are not allowed, especially when someone involved has had major back surgery! LOL It will be a challenge for Addie with the upcoming school year fast approaching, as these limitations will continue to be imposed until next summer. Addie is set to go back to Children's for her check up on Tuesday, August 11th, so please continue to send healing thoughts and prayers her way!
Monday - sunday- July 13th - 19th, 2015
Addie continues to heal! Her pain is pretty much gone! She has had very few meds this past week! Mom took her to get a new haircut and it looks fabulous! Uncle Johnny and family are in town so we will try to get Addie out to Gallagher Lake for some fun times!!
Jenn's Facebook Message from Thursday, July 16th: Ever have one of those "what the frick just happened" moments. Now that we've been able to shake the past couple months off a little, this is what I've been thinking. Those of you who have had health crisis understand. It is like someone just picked up you up, removed you from your life, & threw the unthinkable at you. I am eternally grateful that this didn't turn out even worse (we've seen worse) but seriously, what the...
Anyways, I've had enough wine (could use some more coffee) & have started getting back to "normal" life. Chores are being done, garden is being attended to (thank you Louise & Aimee!), bills are being paid (late but paid...ugh), & Addie is doing pretty great all things considered.
We are weaning her off the last of her medications. It's amazing that she is feeling no pain. She's moving slowly & tentatively but enjoying being home. She's had a couple small falls which scared her but didn't cause any injury. She's pretty weak and down to 42lbs. So, it really is just about rest, healing, & fattening her up at this point.
All our love & gratitude. xo.
Jenn's Facebook Message from Thursday, July 16th: Ever have one of those "what the frick just happened" moments. Now that we've been able to shake the past couple months off a little, this is what I've been thinking. Those of you who have had health crisis understand. It is like someone just picked up you up, removed you from your life, & threw the unthinkable at you. I am eternally grateful that this didn't turn out even worse (we've seen worse) but seriously, what the...
Anyways, I've had enough wine (could use some more coffee) & have started getting back to "normal" life. Chores are being done, garden is being attended to (thank you Louise & Aimee!), bills are being paid (late but paid...ugh), & Addie is doing pretty great all things considered.
We are weaning her off the last of her medications. It's amazing that she is feeling no pain. She's moving slowly & tentatively but enjoying being home. She's had a couple small falls which scared her but didn't cause any injury. She's pretty weak and down to 42lbs. So, it really is just about rest, healing, & fattening her up at this point.
All our love & gratitude. xo.
saturday & sunday - July 11th & 12th, 2015
So far Addie has done really well at home. Her need for meds is decreasing as we slowly ween her off of them. She of course is disappointed by the lack of activity she is allowed to do, but understands considering what she gone through. Our little princess continues to amaze us! Thanks again for all your continued thoughts and prayers of healing!!
friday - july 10th, 2015
Jenn's Facebook Message: Zipline removal went great. Addie was nervous & it hurt a little at the end but so much better than staples or stitches! We even had an audience. I believe the gentleman was from the company who supplies the Zipline closure. Guess he wanted to see how it all turned out!
Warning: Graphic pictures ahead. As requested, here are the pictures Christopher. Pretty awesome! Sorry, science geek in me! Packing and heading home! Latest Update: Addie & Mom arrived home safe and sound despite some delays due to an accident near Peachland (hope no one was hurt!). Daddy is hoping he will make her new favourite dish: Thai Curried Shrimp Pasta! |
thursday - july 9th, 2015
Jenn's Facebook Message: RMHBC 1st year anniversary celebration today included a Celebrity Chef Challenge. Neither Addie's nor my pick won but so much fun!
As for Middle Miss, she is doing great! Two nights now she has slept 7 hours straight! Zipline comes off tomorrow. Fingers-crossed it goes well. |
wednesday - july 8th, 2015
Addie had another good night and spent the day lounging around Ronald McDonald House and watching movies (Barbie)! Bandage removal appointment at Children's is on Friday at 9:00am. The hope is she will be heading home after that!
tuesday - July 7 th, 2015
Jenn's Facebook Message: Today was a good day. Visit from Gramma, colouring with some of The Lion King cast, & improv with TheatreSports. It is so wonderful to hear her laugh again!
P.S. Dad and other kidlets made it home safe and sound (Cynthia). Chris is apparently enjoying a well-deserved cold one on the patio.
P.S. Dad and other kidlets made it home safe and sound (Cynthia). Chris is apparently enjoying a well-deserved cold one on the patio.
monday - july 6th, 2015
Free at last, free at last, thank God almighty, she is free at last!! After close to three weeks in hospital Addie was released today. The pain and back doctors came this morning and gave Addie a good bill of health and the ok to be discharged. She will be staying at the Ronald McDonald House with Mom until her appointment Friday to have her bandage removed. Dad and the other kids head home tomorrow. She will then have a post op check-up with Dr. Miyanji in 6 weeks. After that she will have to take it easy for 9 months as the back finishes fusing the vertebrae properly.
Addie had a full day at the Ronald MsDonald House as you can see below. Besides exploring and finding the room our family named she had her nails done by a professional manicurists who volunteer their time to do the kids nails while they are at RMH. FYI: Families were asked to provide places where we found renewed strength during our tough times. These places would then be used to name each room at the new RMH. She then spent time with the music therapy group before heading out to a local restaurant to celebrate her release. She needed some meds to sleep considering all the activities. We will have to make more of a conscious effort to explain to her the need to slow down.
Addie had a full day at the Ronald MsDonald House as you can see below. Besides exploring and finding the room our family named she had her nails done by a professional manicurists who volunteer their time to do the kids nails while they are at RMH. FYI: Families were asked to provide places where we found renewed strength during our tough times. These places would then be used to name each room at the new RMH. She then spent time with the music therapy group before heading out to a local restaurant to celebrate her release. She needed some meds to sleep considering all the activities. We will have to make more of a conscious effort to explain to her the need to slow down.
sunday - july 5th, 2015
An ok night for Addie, as once again, she needed meds to help her get to sleep. She woke again at 5:30am and needed more pain killers to settle back down. She had a bit of a tumble in the bathroom as her weakened back can't support her weight yet. After a few tears she was back to being the tough kid we all know she is. It was a bit of a wake up call to her, as she does not quite understand how long the healing process will take.
The pain doctor came in and outlined the goal for Addie to be on an "as needed" prescription for her meds as she heals. Dr. Miyanji is away this week so his next in charge came by and answered some questions for me, I asked him that as Addie grows will we need to come back for more surgery to change the cage in her back. He said "no", since the bone will grow around the cage and continue fusing to the upper and lower vertebrae. The only consequence of the cage on growth is that Addie will be a few millimetres shorter. Poor Addie as she will already be vertically challenged as it is!!
Despite the morning tumble the rest of the day went well with Addie spent the morning playing board games with two young volunteers, and then spent the afternoon on a day pass at Ronald McDonald House. She had a blast painting and playing games with her little sister. After getting back to the hospital she slept for four hours straight, which was a reminder to all of us about how much weight and energy she has lost, and that it will be a long haul to get it back!
The pain doctor came in and outlined the goal for Addie to be on an "as needed" prescription for her meds as she heals. Dr. Miyanji is away this week so his next in charge came by and answered some questions for me, I asked him that as Addie grows will we need to come back for more surgery to change the cage in her back. He said "no", since the bone will grow around the cage and continue fusing to the upper and lower vertebrae. The only consequence of the cage on growth is that Addie will be a few millimetres shorter. Poor Addie as she will already be vertically challenged as it is!!
Despite the morning tumble the rest of the day went well with Addie spent the morning playing board games with two young volunteers, and then spent the afternoon on a day pass at Ronald McDonald House. She had a blast painting and playing games with her little sister. After getting back to the hospital she slept for four hours straight, which was a reminder to all of us about how much weight and energy she has lost, and that it will be a long haul to get it back!
saturday - July 4th, 2015
One of Addie's best nights!! She appears to be adjusting well to the oral meds (knock on wood). She had a big visit from Nana just before Mommy and Daddy switched shifts. As you can see from the photos Addie's posture has improved immensely, now she is finding it difficult to bend forward.
friday - july 3rd, 2015
Another tough night for Addie & Mom. It was Addie's first night unhooked and her body is still getting used to oral medication. At one point they tried hooking her back up to the IV, but unfortunately it was not working correctly. The day went well though, so they decided to keep her unhooked. Dr. Miyanji came by and updated us on the plan for Addie's exit. The goal right now is to have Addie released from Children's this Monday, July 6th. We are due back Friday, July 10th to have a check-up and have her bandage removed. Until her 6 week check-up she is to have very limited activiites, but is encouraged to walk about when able. Unfortunatetly that means our big camping trip to vist the cousins in Edmonton is out. Dr. Miyanji did confirm however, that if all's good after her 6 week check-up with him in August, she would be allowed to participate in normal activities as long as they do not involve any rough play (physical contact). So perhaps we can visit before the end of summer holidays?!?!
Thursday - July 2nd, 2015
Another good day for Addie despite feeling light headed when walking around. Addie was disconnected from all fluids today as doctors attempt to place her on oral meds and fluids. Addie has been doing fine when it comes to oral meds (except for one large pill that she always has trouble swallowing). The area in need of improvement involves fluids and food. Jenn has calculated that Addie has lost close to 15% of her body mass. She is eating, but only small amounts. Addie likes Booster Juice so I have found a recipe online that Jenn and I will make for her to get that weight up.
After Mommy and Daddy made the switch Addie got a vist from Tanya, who helped Addie on her road to recovery after she beat cancer. Thanks Tanya for brightening her spirits!! |
wedesday - July 1st (canada day), 2015
Overall a good, action packed day for our little Addie! The night was rough, as Addie & Daddy were up every hour due to the discomfort caused by her catheter. Fortunately, for all concerned, it was finally removed at lunch. Since then, Addie has successfully visited the bathroom with med pole in toe many times. She continues to eat ok, but will need to increase her fluid intake if she wishes to be taken off her IV fluids & meds tomorrow. The pain doctor was in and mentioned their goal of getting Addie off the IV and on oral meds by tomorrow as well.
A big visit by Auntie Erin made Addie's day as well as a visit by little sis. Thanks Auntie Erin for the very cool leaf necklass! The other big news, thanks to her nurse, is that Addie was finally moved into her own room again! Mom was happy as she will be able to sleep better with less distraction, as well as less worry that we are keeping others up. |
tuesday - june 30th, 2015
Addie had an ok night as she continues to struggle with getting to sleep, especially after being awakened. She is still making little whimpering sounds as the length of stay combined with boredom is really getting to her. She was able to have some fun today with some awesome volunteers who hellped her complete the pirate ship I got for her. The nurses removed one of her IVs and the drain for her back. The hope tomorrow will be for them to remove the catheter as it is becoming more and more uncomfortable for her.
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Monday - June 29th, 2015
Addie was a little sore today and had a couple of visits from the Physiotherapy Department to help get her on her feet and start walking a little bit. She is also starting to eat a little more, but is far from where we would like her to be. Mommy has hooked her up with Netflix and some relaxing classical music. As per usual it's all about the pain!
Sunday - June 28th, 2015
Overall a good day for addie. Her pain seems to be decreasing and her crankiness is increasing (a good sign actually, since what 10 year old would want to spend her days lying in a hospital bed). She was moved back onto 3R from ICU, but is still waiting for a room of her own. We are blessed with an extended health that covers us for a private room, but as with everything it's all about availability (we know this is totally a first world problem). Addie is also starting to get food down her, which is another good sign of improved health. Thanks again for your continued thoughts and prayers of healing!
Comment from Jenn's Facebook Page: Okay people, science lesson today. As previously mentioned, Addie lost about 2.2 litres of blood. Just to put that in perspective, a child her size has about 1.5 litres of blood in total. Now, knowing massive hemorrhage was a possibility during her surgery, the doctors were prepared and, on top of having donated blood for transfusion ready to go, Addie also had cell salvage. I had not heard of this procedure happening intraoperationally. The patient's blood is collected, washed, & reinfused (https://en.wikipedia.org/wiki/Intraoperative_blood_salvage). How cool is that! Think of the applications (i.e. less donated blood needed, allowing Jehovah's Witnesses to receive blood products, etc.). On the Addie front, she's feeling "icky", very sore, somewhat nauseous, & mighty cranky! P.S. She's also out of ICU! |
Friday Night - saturday morning- june 26th - 27th, 2015
Much to Addie's relief, her breathing tube was removed late Friday night. The nurses and doctors felt that she was breathing fine on her own and that there was no risk of swelling. Up to that point it had been tough for me to keep it together as she was mouthing the words "help me" and "get it out." Once removed she was able to talk and express her frustration. The past couple of months have been so hard on her, pain wise, and she just wants it to be over. She is showing some glimmers of hope as there seems to be no more pain in her legs. The nurses have been great in upping her meds whenever she is feeling sore so that she can rest.
Addie had a good night sleep, but was sore in the morning when she awoke. I tried to explain to her that the pain was normal as she just had 10 hour back surgery. Tough to reason with a 10 years old, but I made sure to tell her that Mommy and I were so proud of her! |
Friday evening - June 26th, 2015
She is finally out of surgery! It was a marathon at 10 hours, or should I say Triathlon for all the Pentictonites out there! She will be kept sedated until tomorrow. The surgery went as planned. Addie lost two litres of blood, so fortunately she was kept connected to an available blood supply! Jenn went to see her first and warned me that she was all swollen. Thanks so much for all your thoughts and prayers for the doctors and nurses!! Now it's all about healing!
OK, I almost lost it when I saw her! Poor Addie! As you can see she looks like she has gone 12 rounds with Mohammed Ali! So let's count all the stuff going in and out of her: a breathing tube to keep her trachea open due to swelling, a central line into her neck to administer medicine right away, lines going into both her arms for fluids and quick access to blood samples, as well as two sets of pumps providing 5-6 meds and a bag of fluid. Let's just say we are blessed to live in this amazing country with all of its supports! Jennifer & I will always be staunch supporters of our medical system and will fight tooth and nail to protect and strengthen access to all! |
Friday Morning - June 26th, 2015
While I watched the other two, Jenn went to see Addie off to surgery at 7:45am. Addie was awake, coherent, and happy that Mom was there as they sedated her for a 9 hour surgery. It is now lunchtime and no word yet on how it is going. Will post when we hear of anything.
Thursday - June 25th, 2015
Jenn's Facebook message: So it starts. Surgery began a little late due to an emergency case. Addie is in now. She'll recover here at VGH for a little bit then back to BCCH's ICU ward. They might keep her sedated tonight since this surgery is so late & tomorrow's is so early. The horrible night we were fearing might turn into a peaceful one.
Dad and the siblings arrived around 8:00pm at the Ronald McDonald House. Jenn informed me that Addie was still sedated, so the siblings wouldn't be able to chat with her. I left Hayden in Seb's care for a few minutes and went to visit Addie in ICU. She was all puffy and hooked up to a gazilleon meds/pumps/cables, but was resting peacefully as they planned on keeping her sedated until the surgery tomorrow morning. Leaving her under the one-on-one care of her amazing nurse, we all went out for a late bite at Joey's. Over dinner Jenn informed me that Dr.Heran came by earlier and discussed how the previous day's laproscopic procedure went. The first thing he did was inject a small needle through her back and into the mass (vertebroplasty). He then filled it with a cement/cauderizing liquid that did a good job solidifying the tumour and did not show any leaking out of vertebral body. FYI: Vertebrae's are made up of bone and a softer inner core of the main disk. He then began embolization which went well enough and was happy with the results. He described to Jenn how it was a bit of a balancing act of embolizing enough of the blood vessels without compromising any important blood supply to the spinal cord/nerve branches. FYI: Technically the spinal cord has already moved into a branch like (think of horse hair or the alien connectors in the movie Avatar) set of nerves by the time it gets to the L2 vertebrae. Overall Dr. Heran felt it went well. Before calling it a night I walked over and sat with Addie awhile while she slept praying for a perfect surgery and recovery! The nurse was amazed how coherent addie was when she did awaken occasionally. The nurse mentioned that most kids on that many drugs have no clue whereas Addie was asking for her stuffy and her mother. Kissing her on the forehead I left confident in a good day of surgery tomorrow. |
Wednesday - June 24th, 2015
Addie had a rough night of pain and went down around 5:00am. Dr. Miyanji spent some time with Momma and outlined some of what is to be expected post-operation.
Jenn's Facebook entry: "Addie is sleeping comfortably for now. We'll just have to see how the night goes. Physiotherapy & psychology came by today. They'll be checking in & helping Addie with her pain. I also talked to the surgeon, Dr. Miyanji, today. Tomorrow's procedure will be basically the same as the one in May and is just to try to cut off as much blood supply as possible to the tumour. He confirmed the tumour had continued to grow, her L2 was now more than 50% collapsed & badly entrapping caudal nerve roots. Friday's surgery will not only remove the vertebrae but the discs above & below as well. Despite all the hardware that will be installed, the surgeon forsees only a week in hospital. Amazing. We then only need to stick around until we are comfortable returning with her. Wow, way better recovery than I feared. He doesn't think a brace will be necessary & she should be able to return to most activities within a few months. Full recovery will be about a year. Afterwards, Addie will have no restrictions. This is all assuming everything goes well (positive thoughts & prayers, please). On a side note, Addie was so excited to see the messages & gift arrived from Uplands Elementary. You guys rock. She loves looking at the beautiful flowers & shared her chocolate bar with other children on the Ward. Only problem was that she is sad she missed out on end of year events & the chance to say good-bye to everyone in her class. Chris, please let the kids know how much she appreciated everything, that she is thinking about them all, & wishes that she could be there in person to say good-bye." Tomorrow Addie will have her laproscopic surgery at 12:30pm and we are hoping that Dr. Heran will be able to cauterize as many of the veins to the tumour as possible! Addie is set to go into her back surgery with Dr. Miyanji Friday at 8:00am! The rest of the family will head down to Vancouver after lunch for support!! |
Tuesday - June 23rd, 2015
Addie had a slightly better day today as the Acute Pain Team administered a whole slew of medicine to help with the pain, from muscle spasms and neurological pain to regularity (see image). For those of you concened with us allowing such a brew to be administered please come and watch her for a night. As I mentioned to a nurse taking care of Addie that it was not too different to being next to Jenn as she gave birth to Sebastian (9 1/2 pound boy + wife with no hips = pain)! Addie even had the shakes when the pain became too much. Two more days, two more days!
It was change over day as Mommy arrived to take over, so Dad could fly back to Penticton. Good luck Mommy!! A big thanks to Grandma for covering the cost!! And another big shout out to Uncle Chris for taking care of Sebastian and Hayden so the switch could be made. Daddy is looking forward to sleeping all night!! The whole family will be reunited on Friday to be there as Addie undergoes back surgery. |
Monday Evening - June 22nd, 2015
Met with Dr. Heran tonight and he advised me that the x-Ray and MRI had shown a further collapse of Addie's L2 vertebrae. In order to remove Addie's pain and any potential nerve damage he recommended the removal of the tumour with the vertebrae. The first step is for him to prevent any hemorraging during this removal by going in laproscopically on Thursday and cauterize the remaining veins feeding the tumour. Then on Friday Dr. Miyanji will remove the vertebrae & tumour and replace it with a surgical cage that will help fuse the upper and lower vertebrae with supporting rods and pins. Suffice to say Mommy and I are freaking out, but are at the point where Addie's pain must be relieved.
Monday - June 22nd, 2015
Hello All!!
Massive thoughts and prayers of healing and guidance are required as I found out today the plan for Addie and her back.
Dr. Miyanji (back speacialist) met with me today and told me that they will have to remove the vertebrate, as the tumour has not responded to the cauterization procedure carried out a month ago by Dr. Heran (laproscopic neurosurgeon). The MRI scheduled today will give Dr. Miyanji and Dr. Heran an idea of how best to approach the removal. Dr.Heran will first be asked to go back in laproscopically and cut off the remaining veins feeding the tumour. Dr, Miyanji will then go in to remove the vertebrate now that hemorrhaging or bleeding will be kept to safer levels. Addie will then have the whole vertebrate removed and replaced with a special cage that will fuse with the upper and lower vertebrates. She will also have pins and rods implanted in the upper and lower vertebrate for support.
Suffice to say Mom and I are freaking out so please send positive thoughts and prayers Addie's way so that her pain is manageable. Also any thoughts and prayers of guidance would be appreciated for both doctor's as they help heal our daughter. Thank-you for all your continued support!!
Massive thoughts and prayers of healing and guidance are required as I found out today the plan for Addie and her back.
Dr. Miyanji (back speacialist) met with me today and told me that they will have to remove the vertebrate, as the tumour has not responded to the cauterization procedure carried out a month ago by Dr. Heran (laproscopic neurosurgeon). The MRI scheduled today will give Dr. Miyanji and Dr. Heran an idea of how best to approach the removal. Dr.Heran will first be asked to go back in laproscopically and cut off the remaining veins feeding the tumour. Dr, Miyanji will then go in to remove the vertebrate now that hemorrhaging or bleeding will be kept to safer levels. Addie will then have the whole vertebrate removed and replaced with a special cage that will fuse with the upper and lower vertebrates. She will also have pins and rods implanted in the upper and lower vertebrate for support.
Suffice to say Mom and I are freaking out so please send positive thoughts and prayers Addie's way so that her pain is manageable. Also any thoughts and prayers of guidance would be appreciated for both doctor's as they help heal our daughter. Thank-you for all your continued support!!
Sunday - June 21st, 2015
Despite a sore morning this was a good day, especially when Uncle Tony and family were coming for a visit! Thanks Uncle Tony and Auntie Sonia for Addie's wonderful Lego Frozen Castle! Although everyone said cousin Jessica seemed to love it more! And a big thanks to Uncle Tony for taking Daddy out for a cold one!
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Saturday - June 2oth, 2015
This could probably be called "Addie's Worst Day Ever" or at least it felt that way! As we were placed into the 3R ward Addie's pain increased to the point where she felt her legs would fall off. After searching out a doctor and spewing a few angry words in frustration for the lack of speed in dealing with her pain (i.e. as those of you who have had acute pain know we were chasing the pain instead of being ahead of it) the doctor advised me to request the Acute Pain Team to get involved which they did. After the support of a wonderful night-time nurse we were able to give her a good night sleep.
fRIDAY aFTERNOON - June 19th, 2015
What Addie didn't know, and what Daddy made sure not to tell her, was that she was about to be taken down to Children's Hospital. Her pain at night was becoming too unmanageable for her mother and I to control. Jenn and I find it amazing that Addie will moan in pain throughout the night, but then is up and dressed in her finest for school the next morning awaiting new adventures. Well suffice to say Daddy made an executive decision (for once) and set a plan in motion to get her down to Children's. After many phone calls to various doctors & specialists we were asked to take Addie to the Emergency ward at Penticton memorial Hospital, due to concerns about her legs beginning to feel numb (tingling.). The Oncologist at Children's was concerned that she may require an Air Ambulance down rather than take a long drive down in the truck.. So I sped our plans up a bit and picked up Addie from Uplands. After many hugs and words of encouragement we were off to emerg. We arrived at PMH at 3:30pm and waited until 11:00pm for the air ambulance. Suffice to say I was not happy. I could have been down there at 9:00pm, but my level headed wife reminded me would I have had medical support with me in my truck? The paramedics ended up being amazing, as usual, and depite the small plane and bumpy ride we were landing in less than 40 minutes.
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Saturday - FridAY, June 13th - 20th, 2015
Addie had a full week as she obtained her Wheelchair from the Canadian Red Cross (awesome volunteers!) and was able to participate in a number of Uplands actvities with the amazing support of her teachers, administrators, and support staff! On Wednesday she went with her class to Nk-Mip cultural centre in Osoyoos where she learnt about First Nation culture/history and the natural life of Canada's only desert. Thanks to Ms. Hepso for driving her and her wheelchair! On Friday she was able to participate in "Fun Day" where she was able to take part in a number of activities. Ms. Evanoff pointed out that Addie said it was "best day ever!"
Wednesday - Friday, June 10th - 12th, 2015
Addie had a sleepy Wednesday at school, as she was often found snoozing in the "sensory room." Addie felt that she would avoid a painful night by getting as much rest as possible during the day. We had told her to start taking it easy and that her back was in pain at night, because she was doing too much during the day. Both Jenn & I felt that she had taken that reasoning a little too literally!
Addie had an important meeting with her Paediatrician in Kelowna on Thursday, with Daddy rushing out of school to deliver her to Mommy's Taxi service in Summerland. We had a whole bunch of questions for Dr. Warshawski, who made sure to answer each and every one, even to the point that he contacted Children's with Mom & Addie in the office. So here goes the plan of attack:
Addie had an important meeting with her Paediatrician in Kelowna on Thursday, with Daddy rushing out of school to deliver her to Mommy's Taxi service in Summerland. We had a whole bunch of questions for Dr. Warshawski, who made sure to answer each and every one, even to the point that he contacted Children's with Mom & Addie in the office. So here goes the plan of attack:
- The doctor felt we needed to get ahead of the pain (pro-active), rather than chasing it (reactive). So he recommended us giving all of her meds every 8 hours with the option of pain killers being used in between when needed. As of Friday night, this seems to be working as Addie had a good day at school and was walking a little straighter.
- Like the Orthopaedic department at Children's, he was unsure if she was progressing or not and wanted Addie to head down to Children's a week early (next week). His thoughts were that we may not be out of the woods yet, and that Addie may need further surgical intervention. Fingers crossed that the results next week at Children's will reveal that she is actually improving and that the tumour is shrinking/solidifying.
- He informed us that the MRI results from back when Addie was at Children's, showed that the fracture collapsed the vertebrae by 50% and healing will take time.
Sunday - Tuesday, June 7th - 9th, 2015
Addie continues to have a lot of pain at night. Her mother and I believe that she may be trying to do too much during the day, and is not respecting the fact that her back is broken and needs time to heal. We have asked her to take it easy at school and take advantage of rest breaks throughout the day. She has an appointment with her paediatrician on Thursday and the hope is we will get more guidance of what to do to speed up the healing process and decrease the pain. Continued thoughts and prayers of healing are greatly appreciated!!!
Thursday - Saturday, June 4th -6th, 2015
Despite having a partial break from school on Friday with Daddy, Addie continues to struggle with pain and posture. Addie describes the pain as more like pinching now than throbbing, but still requires medication (especially at night) to manage it. It will be our two week anniversary of the surgery on Monday and Mom and Dad hope for more progress.
Monday - Wednesday, June 1st - 3rd, 2015
Addie enjoyed her time back at school, but needed breaks throughout the day to rest. A big thanks to the administration, teachers, & staff (especially Ms. Irvine, Ms. Evanoff, Ms. Degeorgio, & Ms. Hepso) for all the support they are giving Addie during and after school!! Addie is so blessed to have such a wonderful school in Uplands Elementary! Can't forget to mention that Ms. Hepso's hot tub was a big hit for Addie after school!!
Jenn and I are concerned that there hasn't been any improvement in terms of pain and posture, but are holding off on judgement as it is only a week since the surgery. Continued healing thoughts and prayers are much appreciated!
Jenn and I are concerned that there hasn't been any improvement in terms of pain and posture, but are holding off on judgement as it is only a week since the surgery. Continued healing thoughts and prayers are much appreciated!
Friday - Sunday, May 20th - 31st, 2015
Addie was able to join the Skaha Lake Middle School Teacher/Admin Campout each night before heading home with Mom for some good sleep (no little sis to wake her up)! A fun time was had by all, especially when Daddy's promised sparklers were distributed to all the kids! Daddy promised Addie that we would celebrate Addie's no-cancer results with sparklers. Hayden would like to thank Mr. Sabourin for setting up the cool tight rope!
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Relay for Life (Saturday, May 30th, 2015)
Our little hero was able to participate, via Hayden's stoller, in this years Relay for Life at the Pen High Track! Even Hayden got into the act!! Addie continues to struggle with pain and in keeping her back straight. We are hoping, as time goes by, both will improve.
Thursday, May 28th, 2015
Addie is coming home tonight!! The Orthopedic department, to which Addie is currently a patient, sent Mom home with meds to manage any pain Addie may have. They want us to bring her back in a months time to do some follow up tests and see how the tumour is reacting to the surgery. The hope, as mentioned, is that the tumour will shrink and harden now that its blood supply is cut off. Continued positve thoughts and prayers arer requested to help achieve that goal!
Wednesday Evening, May 27th, 2015
Momma called and said if nothing changes Addie and her will be heading home tomorrow!!! Yeah!! Daddy's little trooper!
Jenn's recent message from facebook: Escaped & hanging out at RMHBC (Ronald McDonald House). Finally got some news today! The oncology crew can thankfully be very tenacious when need be. Addie is to return home (hopefully by the weekend...or even sooner) & let her back heal. In 4 weeks, she is due back down for the orthopaedic surgeon to access the status of the hemangioma. We will learn more then. If we can wean her off the daytime morphine. Addie can even return to school on Monday! |
Wednesday Morning, May 27th, 2015
Lots of Pain Some Pain Little Bit of Pain No Pain
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Daddy headed back to Penticton today to take care of the other kids! Addie is doing well and seems to be in the blue to light green area of pain. Addie didn't like numbers so Dad came up with a colour coded system with Blue being no pain, then green (little bit of pain), then yellow & orange (some pain), and red/purple (lots of pain). Jenn should hear from Dr. Heran (Neurosurgeon) tomorrow.
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Tuesday, May 26th, 2015
A big thanks to Addie's teacher, Ms. Irvine and classmates for her huge fox stuffy she calls Todd (from the Disney classic, The Fox & The Hound)! We heard confirmation today from Dr. Elaine (Oncologist) that the cancer boat has left the harbour, as Addie's bone marrow biopsy came back negative for cancer! Yeah!
Addie continues to recover from her surgery. Dr. Heran is away until Thursday so we should have a follow up with him then. Hopefully a plan of recovery will be developed that include Addie going home. Dad will be heading back to Penticton and his classes on Wednesday. A couple of volunteers were kind enough to play with Addie and give Mommy & Daddy some away time. Thanks volunteers!! Also a big thanks to Uncle Wayne for taking Daddy out for a couple of cold ones! He needed it! |
monday, may 25th, 2015 (7:30pm)
Addie's surgery went well. The surgeon (Dr. Heran) informed us that the tumour is not cancerous, since it bled profusely when he tried to take a piece of it out for a biopsy (cancer tumours don't bleed much). He then told us that he was able to cauterize some of the veins that were feeding it. Now we will wait and see how the tumour reacts. There may be further operations if they do not see it shrinking over the next couple of months. Addie will be sore for the next month and will require some less intensive x-Rays to observe the tumour. We are not out of the woods yet, but Mom and I are thrilled that it is not Addie's cancer coming back! A big thanks to the nurses and staff at BC Children's Hospital for the presents and for adding a few changes to Addie's room for when she got back from surgery! Notice the cool disco ball daddy got for my rock star!!
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Monday, Mat 25th, 2015 (1:30pm)
Monday, May 25th, 2015 (11:20am)
Addie's 10th Birthday!!! Her operation is scheduled for 2:00pm. Hoping and praying for perfection by the surgeons and a tumour that will fade away! Thanks Safeway for the Frozen balloon, and yes to all those Frozen fans out there, Anna is on the other side!
Sunday Evening, MAy 24th, 2015
Sunday Afternoon, May 24th, 2015
Sunday, May 24th, 2015
Saturday, May 23rd, 2015
Addie is free from Chidren's for a few hours today. She had a blast singing karaoke to one of her favourite movies.
We were told this morning that Dr. Heran, a neurosurgeon who specializes in endovascular neurosurgery, will be performing a laproscopic procedure to cauterize her tumour on Monday. The procedure involves going up a large vein/artery in her leg and then injecting a radioactive dye like substance that will show all the veins feeding her tumour. Then they will inject a "magical" fluid that will cauterize each of those feeder veins. The hopeful result will be a tumour that shrinks and fades away due to the fact that it no longer has blood feeding it.
We were told this morning that Dr. Heran, a neurosurgeon who specializes in endovascular neurosurgery, will be performing a laproscopic procedure to cauterize her tumour on Monday. The procedure involves going up a large vein/artery in her leg and then injecting a radioactive dye like substance that will show all the veins feeding her tumour. Then they will inject a "magical" fluid that will cauterize each of those feeder veins. The hopeful result will be a tumour that shrinks and fades away due to the fact that it no longer has blood feeding it.
Friday, MAy 22nd, 2015
Today we learned that after much analysis the doctors are certain that the tumour (hemangioma) in Addie's spine (L2) is the benign one first seen in 2012. Jenn was told that there are three possible ways in which they can go to deal with this aggressive tumour:
a) Worst case scenario is to completely remove the vertebrate with the tumour and put her spine back together again with pins & rods. Obviously, this would be the most intense/invasive scenario, and carries with it the most surgical risk. It may also lead to chronic pain issues with her back in the future.
b) The next scenario would see the Neurosurgeons injecting a special "crazy glue" that goes into the tumour and cements it solid. After which, it may just be observed or removed.
c) The third and least intensive procedure would be to go into the area laproscopically through a large vein/artery and cauterize the veins feeding the tumour. The hope is that without a blood source the tumour will shrink and fade away and become a non-issue.
a) Worst case scenario is to completely remove the vertebrate with the tumour and put her spine back together again with pins & rods. Obviously, this would be the most intense/invasive scenario, and carries with it the most surgical risk. It may also lead to chronic pain issues with her back in the future.
b) The next scenario would see the Neurosurgeons injecting a special "crazy glue" that goes into the tumour and cements it solid. After which, it may just be observed or removed.
c) The third and least intensive procedure would be to go into the area laproscopically through a large vein/artery and cauterize the veins feeding the tumour. The hope is that without a blood source the tumour will shrink and fade away and become a non-issue.
Thursday, May 24th, 2015
Today was the most heart wrenching day we have had since Addie's first cancer diagnosis when she was 14 months old. In the morning, Jenn was visited by a number of apologetic oncologists sent to inform her that there was a tumour in Addie's spine. Then 30 minutes later, Jenn asked could it possibly be benign like her last tumour. The doctor thought for a bit and said she would go and check where the last tumour was found. The doctor came back excited informing everyone that the tumour was in the same spot as Addie's original benign tumour. An hour later, it was confirmed that after examining all the scans she determined this tumour was in the same spot. She was also told that a biopsy was out of the question as the hemangioma could burst and bleed profusely if poked.