Saturday, 30 July 2016

A Robbery

The day after I wrote the last post Priscilla's quiet little town had as many as 50 cars and vehicles broken into, hers included.

The thieves stole over $300 of items such as cash, gift cards and her medications after she left her purse in there...she had taken all three children for a long bike ride and a play in the local splash pools before bed and when she got home she had so much to carry in and sort out that she forgot to go back out for the purse. Needless to say she is shocked and feels violated by this and also worried that they will come back.

Intra-venous anti-biotics were supposed to have been started for her kidney infection but that got mixed up and instead of home care nurses coming out to her she was told to be at the hospital at 7.30am the following day to have the drip started.

I just wish I could wrap her up in a gentle hug and make it all better but that will never be the case so instead we chat and stay close that way~~~please keep them all in your hearts.

Happier/healthier times 10 years ago at her aunt and uncle's house


Let's hope this coming week goes better
Sue

Tuesday, 26 July 2016

How Things Are Now

So much has happened since our last update...Priscilla has again beaten all the odds and expert opinions to conceive another baby boy, due December 9th.
However the original tumour has started to grow, it's blocked her left kidney and necessitated a tube to be inserted to drain it to an external bag. It's been very painful and becomes infected very easily so she's on strong pain medications as well as anti-biotics now.
A second tumour has developed next to her left ovary and that is a serious cause for concern. Her oncologist plans to start chemo in the third trimester and deliver the baby as early as possible via caesarian section.

These are Priscilla's words

"'Saw my OBGYN today and although I haven't been gaining weight baby is growing very well. He is measuring at 23 weeks and I'm 21 weeks. I thought I was 20 but apparently i lost a week somewhere according to him lol. Blood pressure was normal and no longer a worry. I was sure my blood pressure was high because I was in more pain than usual. See him again on a month. Last week I saw dr. Nicholas and hes concerned by the weight loss because it may mean the tumor is growing. Hoping it's not. I have an MRI at the end of August and an appointment with a dietitian over the phone tomorrow to try to find ways to increase my intake. Problem is with the baby growing and the tumor there my stomach has shrank as it has no room and my appetite is non existent (unless it's Riverside pizza haha but not so much affordable to eat every day ). I see dr. Nicholas again on the 9th of August again for a quick follow up. The infection in my nephrostomy seems to be coming back a bit again too so may have to head back to emerge earlier for more antibiotics. I have about 2 days left of the original prescription. I wish there was an easier solution to that problem. Although the tube has relieved an immense amount of pain I now have pain in other areas and extreme exhaustion from fighting the infection. It seems like a lose lose but trying to keep my head up. Thank you everyone for your support."'

Counselling is helping keep her head above a water these days as she also lost her beloved father-in-law last month but caring for a busy young family certainly takes your mind of things for a lot of the time

Summer rolls on and they are all enjoying lots of outdoor time...


 Even when it's raining they don't want to come inside...


Liam turned 3 and thoroughly enjoyed his birthday party in the garden with his family and friends...


So that's where we're at today, wishing and hoping for the very best for Priss and Will and all their loved ones, please continue to keep them in your thoughts and prayers,

Love from Sue

Saturday, 18 October 2014

No News Has Been Good News

After waiting many, many weeks to hear from the Toronto team about the radical radiation treatment they'd suggested Priscilla's Dr Nicholas has decided the following...

"
Dr. Nicholas and I both agreed that the MIBG radiation therapy would be too risky since they wouldn't know what dose is safe for an adult as it hasn't been done to anyone over 40 lbs. at this point we also agreed that leaving Toronto out of the equation was probably the best bet as they haven't done anything for me nor have they ever followed through with any of their action plans. So for now we will just do scans every 3 months an keep it at that. I'm content with that. It doesn't mean I'm in remission but it means it's currently under control and to me at this point that's the best news I could get.
 — feeling content. "



Special birthday brunch for a special lady...

Priscilla and Will and the children are loving their new home, the girls have settled happily into their new school and Liam is walking now. The first Thanksgiving dinner has been enjoyed by a large group...here's what Priscilla cooked...
"
Getting ready for thanksgiving dinner, meat pies and Turkey in the oven, ham in the crockpot, potatoes, sweet potatoes and corn on the stove. Desserts were made Thursday, pumpkin tarts, blueberry pie, peanut butter fudge and chocolate mint cookies. Just have to get the hors d'oeuvres in the oven soon and waiting for people to come. Happy thanksgiving everyone, I'm thankful mostly for my family



Liam doesn't look too sure about this pumpkin...I think he'll enjoy the 'candies' at Halloween lol


Well and truly Autumn, the family and special friends went to a farm nearby and chose a pumpkin each.The children played in a huge barn and enjoyed a tractor ride ...


Not Tarzan's Jane but our Kyra!

Thank you Mel for the great photos :)

We'd like to thank all our readers who have given Priscilla such support during the early days which were especially dark...we had no idea where she was headed or that we would welcome Liam into our family during this awful time. Much love and gratitude to you all.

Sue
xxxxx


Friday, 30 May 2014

Update

Hi everyone,

Sorry I haven't updated in a while, but I haven't heard anything either. Finally, being fed up of waiting, I started to consistently call Dr. Nicholas's office and finally heard back from him this afternoon. Apparently, he forgot about me because he never heard anything from Toronto and Toronto forgot about me completely. So Toronto took my file to the rounds meeting this morning. A rounds meeting is where all the oncologists sit together and discuss their patients with all the doctors (especially special cases like mine where they aren't sure what to do). So they discussed me at the rounds meeting today and all the surgeons agreed that I would be worse off after surgery at this point because at this point the tumor is still attached to the spinal cord and some nerves. They need the tumor to be smaller to feel comfortable with surgery.

So this is what they decided on, bear with me because it's hard to explain. They didn't give me the name of the procedure, but I will explain it as Dr. Nicholas explained it to me.
There is a special scan for neuroblastoma patients called an MIBG scan. Before the scan, I get a special radioactive injection (the initials of the chemicals are MIBG). Anyway, the chemicals are attracted to the neuroblastoma cells and light them up for the scan. This procedure which is new to Canada and ony available in Toronto (not Ottawa) is the same kind of chemical but stronger and is given through IV. It's supposed to attack the cancer cells and hopefully drink the tumor. (Wouldn't that be lovely). Therefore, I have to go to Toronto twice this summer. First time is one day for an assessment to make sure I qualify, which I obviously will but the doctors also want to see me in person and explain the procedure better. Second trip, I will get the iv infusion an then have to stay in the hospital for 5 days as I will be highly radioactive and am not allowed out in the general public. I will be in a special room with a special X-ray wall so that visitors won't get radiation from me. It will be hard for me because I hate being away from my family, especially the kids and it will be boring because I can't even go outside for walks etc etc. I will post more when I know more and when the appointments are booked.

In other news, Liam's starting to perk up from his pneumonia and we are moving to Cornwall on July 5th to a beautiful one floor bungalow house with a big yard.  It will be a new and fresh (well-needed) start.

Thanks everyone
Priscilla.

Elizabeth had some fun in the mean-time



Tuesday, 18 February 2014

An Update

Sue here and I am so sorry to have let this blog go so long without updating it.

Priscilla endured a long and debilitating round of chemo before Christmas but it failed to shrink the tumour at all. After waiting many weeks for her team to decide their next actions she finally has appointments booked next week for MRI and ct scans and something else that I can't remember, for one scan Priss must lie perfectly still on her (sore) for 2 hours :(

In the meantime we've been seeing some lovely photos of the family, Kyra has turned 5 years of age.




This is what Priscilla was told at the recent parent-teacher interview...

""Had parent teacher interview today for Kyra. Her teacher had nothing but great things to say about Kyra. In 5 months he has progressed so much and is doing extremely well with her French. She is very polite and lovable and well-mannered. Apparently she has 2 little boys fighting for her love. I was told that the 2 little boy got into a fight over her and she told them to stop fighting because they could both be her boyfriends lol. They start too young. I'm gonna have problems with that girl when she is a teenager. The only complaint that the teacher had about Kyra was that when it is time to get dressed to go outside or go home, she is slow to get ready because she is too busy talking, so now she has a special corner alone so she can get ready""

There has been very heavy snow recently in Ottawa and the family has been out to the Winterlude festivals twice this month...

Megan looks so cute here...



and Liam just keeps growing..."Wait! I've got something to tell you."



"Oh never mind, it will keep"


2 sleepyheads...



and last but not least, the scene from the front door last weekend...




Just adding a note from Priscilla regarding her scans etc Fingers crossed for better results xxx

"All my scans are booked . Have my MIBG scan booked from feb 25-27th. My MRI is booked for the 26th after my MIBG scan and my CT scan is booked for March 6th. I see Dr. Nicholas on the 10th of March. Hopefully Toronto will have had a chance to review most of the scans and let me know what the next step is."

Saturday, 26 October 2013

Round 2

Hi everyone,
Sorry for the late post.. My second round of chemo was delayed by a week due to the fact that I got a double ear infection and was basically bedridden for 2 weeks. It finally cleared up but I was feeling a little bit low still but decided to push on and get it done.  The faster I do it the faster it's over is my thought process.. My blood counts were also in the unsafe range to do chemo that week. The second round went as smoothly as it could as go.. Saw Dr. Nicholas on the 15th of October and we also decided that we would do Neupogen injections again this round.. They help your body create white blood cells (necessary to fight infection) that the chemo is destroying. I forgot the joint and muscle pain that was associated with the injections but I am staying positive that they will help me stay out of infection range and keep me at home with my babies instead of hospitalized. Chemotherapy ran every day from the 16th of October to the 20th.

The post-chemo scans are starting to be scheduled slowly. Toronto want a CT scan, an MRI and an MIBG scan. The CT Scan is scheduled for Nov 21st, the MRI for November 27th and the MIBG is pending scheduling because they need a 24 hour urine test done before which I will do sometime this week. The MIBG is the longest of the scans as you have to go in multiple days.. Day 1 you get some sort of radio-active injection which you need to get special meds to help counteract the affects of it as well. Day 2 and 3 and sometimes 4 are 2 hour scans.

I have been hooked up to home hydration since Saturday and it seems to be helping as I go out almost every night for a short walk with the girls.. Most of the time I don't really want to go, but the girls really enjoy the walk and beg for it. My blood pressure has been running very low and the hydration helps to stabilize it to an acceptable number. It was at it's lowest Friday morning hitting an all time low for me of 79/38. I could barely sit up with out getting dizzy let alone stand up so I spent most of that day in bed. I have 3 more days left of hydration and then hoping my body will recover on its own from then.

Next doctors visit is November 4th with Chemo running for Nov 6th-Nov 10th pending blood counts are safe for next round.

Thank you everyone for keeping me in your thoughts and prayers.. Hugs and love to you all..

P.S. the 2 year anniversary mark of diagnosis is fast approaching (Nov 24th) :( I was hoping last year at this date that I could say I was cancer-free, but other things were planned for me and now I have a beautiful son to show for it.

Monday, 23 September 2013

First round of chemo

Went in every day last week for chemo. Came home and slept every day. Really feeling exhausted but trying to focus on the positive. I'm doing this so my kids have me around longer :). It's tough on me to hear them cry for mommy when I'm upstairs sleeping away, but I know that sleep means healing. Hooked up to home hydration so I can keep up what little energy I have. I try to make it downstairs for a bit of cuddle time. It's easier with Kyra in school. I get about half an hour of cuddle time with Megan before her nap and then rest again. I get up for Kyra's bus and spend half an hour with her before Megan wakes from her nap. Try to hang out for supper and back to bed. Liam gets me here and there for feedings and naps with me :)

Week 2 of each round is when I am most susceptible to colds and flus and infections. Any of those, will land me in the hospital. Happened twice last time,so I try to get the girls to understand the importance of hand washing. Especially with Kyra being in school. I do not want to catch an infection and land in hospital for a minimum of 4 days, getting blood transfusions and antibiotics and being depressed and sad and crying and away from my babies. 

My neighbours and hubby have been very helpful. Bring the girls out for a run around the block after supper and bringing snacks and meals for me and the girls. They are wonderful people. God bless them. They understand I need all the rest I can get and are always telling me not to worry and ushering me back to sleep. Day 7 to 14 of each round is supposed to be when the chemo is killing all those bad cells... Unfortunately killing the good with it but those know to reproduce and should be back up to normal levels by Day 21. That's when I start the next round again. Scheduled for October 7-12th. Please bear with me if I don't post. I do try to do updates on Facebook as well so feel free to add me on Facebook if you do not have me on there :). 

Thank you for your continued support and comments. They really make my day :). 

Love and blessings to all

Priscilla. 



Resting with Liam

Mommy's big helper
Mommy's banana eating monkey


2013 Family Picture <3 all my loves.