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. 

Wednesday 11 September 2013

Getting stressed.

Hi everyone,

Liam is doing so very well and blowing the standard newborn weight gain of 5-8 oz per week. He gained 11.5 oz last week and 13.5 oz this week!! Super proud mommy here :). Here he is smiling. It's a little blurry cuz he wouldn't stop moving his head :). 

Happy boy he is :). 

In other news, chemo is coming fast and making me feel ill because I'm feeling stressed. I've unfortunately have already had a few bouts if anticipatory nausea, which I also experienced last time around.  I do feel confident though that things will run smoothly on the medical end of things though. My nurses,  from Saint Elizabeth Home Care,  visited today and gave me a letter to bring to my doctor on Friday with a complete chemo action plan. Basically, access to IV hydration as it helped me sooooo much last time and wasn't discovered until the final round of chemo,  subcutaneous injection anti-emetic (anti-nauseant) meds and portacath access. 

At this point, I am really not looking forward to doing chemotherapy once again at all but am also in the state of mind to get it done and over with.... I want my life back and I want to enjoy my family and stop feeling stressed and tired and weak all the time. 

I am very happy with everything that got accomplished when my step mum and dad were visiting the past two weeks (by the way 2 weeks is not very long when you have visitors) :( . I mustered up as much courage and energy as I could (all while wrangling 3 children under the age of 4, with one who is up every 2-3 hours wanting to eat) and Sue was an amazing and I mean AMAZING help as well and we got my main floor completely de-cluttered and cleaned. Feels very rewarding to see it that way, knowing all the effort that was put into getting it that clean. Also when Sue or I (mostly Sue) would prepare supper, we would make an extra dish or two and stick in the deep freeze. We also set up and froze a few meals to throw into the crock pot in the mornings. Hopefully a few more friends and neighbours will gather around and help with meals as well as it will be very difficult for me to get those kind of things done during chemo and the energy I will have, I will want to spend with my children, not in my kitchen, cooking. 

So next appointment is Friday, September 13th at 1:20 PM. It's the pre-chemo appointment with Dr. Nicholas and then chemo is every day the following week. Monday the 16th at 10 am, Tuesday the 17th at 10 am, Wednesday the 18th at 10:30 am, Thursday the 19th at 11 am and Friday the 20th at 11:30 am. I will try to update Friday if there is any new information. 

Thank you everyone for keeping me in your thoughts and prayers. I love each and everyone of you. 

Priscilla

P.S.  We got our family pictures done at Walmart on my birthday. Should be arriving anytime. Can't wait to see them. Wanted to get a nice one of all 5 of us before my hair goes again. But in the meantime, here is a nice picture of Daddy and his 3 babies <3

Monday 12 August 2013

Treatment plan of action

Doctor Nicholas did a happy dance when he saw my MRI results stating the tumor had went down in size. We aren't sure, but we think their is a hormone connection to the cancer. He is confident enough to let me wait one more month as this is a critical bonding time for me with Liam. I see him again the 13th ofSeptember  and we plan to start treatment the 16th. It's a 5 day outpatient  schedule. Each cycle is 3 weeks. The first 5 days of each cycle I go in every day for treatment. The drug used will be Topotecan. We will do 3 rounds and schedule surgery after the 3rd round. Side effects unfortunately mean that I will lose my beautiful curls once again :( :( :(. Here's praying that God keeps giving me the strength I need to fight through this for me and my family (and friends).

Thanks for keeping us in your thoughts and prayers.

Xox
Priscilla

Thursday 25 July 2013

Liam Comes Home

From Priscilla

"""Guess what time it is???? Home time!!! Liam has been doing so well that we are being sent home . Please remember that he is still considered premature and visitors will still be limited to one a day! Sue will be updating my blog so please remember to read it. My rules will be posted along with the blog. Thank you everyone for your support and well wishes.""""

In his capsule ready for home...



From Sue
Liam is already doing so well that the team have decided to let him go home already!

He is still very tiny and his Mom is still recovering so the Specialists at the hospital have asked Will and Priscilla to stick to very limited visits for the time being.

As before would local family and friends please arrange (by phoning Priss) a time to visit and limit your visit to 20-25 minutes as Liam needs to be kept very quiet and not over-stimulated. One visitor per day will welcomed and obviously if you are unwell or have unwell family members please stay at home for now as per these instructions from the Specialist Team

We'll continue to post lots of photos of him and some with Kyra and Megan of course and thank you for your understanding.

If you didn't know already the MRI scan Priss had on Friday shows that her tumour has continued to shrink during her pregnancy...we are elated as you can imagine and are waiting to hear what treatment her oncologists will recommend next.

Much love to the whole wide world from us all
xxxxxx

Monday 22 July 2013

Liam is Here!!!

I am so very sorry to have taken so long to post this wonderful news...Liam was born at 2.25am on July 19th after a marathon 54 hours labour! He weighed in at 5lbs 1oz which was really good considering he is 5 weeks early because of Priscilla's cancer.
Liam is thriving, nursing fiercely and winning hearts and his Mum has my complete and utter admiration for her strength, courage and maturity...I call her Warrior Queen now!

This is Day 1, Liam spent his first 12 hours on a ventilator, he had x-rays and blood tests too...2 hours old and then 12 hours old after the breathing tubes had been removed. He's a beautiful baby.



On the second or third day he was moved to what Priss calls his "big boy bed" and he was able to breast-feed at last...


These photos are from Monday so he's 3 days old in them...we're deliberately  taking and sharing lots of photos as visitors are strictly restricted, Priss is still recovering and Liam needs to be kept quiet and safe from illness etc...













As he was rather fussy 2 nights the Night Nurse looking after him thought it a good idea to blame Priscilla for his condition...suffice to say she was "told" by Priss and removed from caring for him!

Not long after Liam's birth Priscilla was taken off for an MRI scan of the tumour and we're still awaiting the results of that. Fingers crossed please.

So, a long and stressful week or two for every-one concerned. Liam is here now, very healthy and so much loved by all...can't wait to hold this little Love in my arms for real.

Thank you all so much for your kind words, thought, prayers and messages,
Love from us all
xxxx 

Wednesday 17 July 2013

A Message From Priscilla

Priscilla has now been in hospital for 12 hours and her labour is going slowly and gently. As soon as Liam is born we'll let you know but in the meantime it is very important that the strict hospital rules are followed regarding visitors to the Neonatal Intensive Care Unit, The Ottawa Hospital.
Liam's health is the primary concern here and we beg that you do not try to visit if you are unwell or have been with any-one who is unwell. These tiny babies in the Unit are very vulnerable for their first weeks.
Priscilla is not in the best of health as you know so please let's make this as easy as possible for her.

These are the rules at the Unit...(click on the link)

Will and Priscilla may visit at any time. Kyra and Megan may visit in the afternoons only.

Other visitors only between 3pm and 7pm and ONLY 2 per day may come, they must be accompanied by either parent and go in 1 at a time, for example if 2 people come to visit then they will be taken in one at a time by either Priscilla or Will. Priority will be given to close family at first.

We understand that every-one is very excited to meet Liam and are sorry it may be a while before you can go in. Priscilla asks that you message her to arrange your visit so that she can work out a time-table.
At this time it is not known how long Liam will be in hospital, he will stay in the Unit after Priscilla has been discharged and this will be a very stressful time for the family.

I'm sure Priss and Will will be posting lots of photos of their son and each other on Facebook :)

Thank you in advance for your consideration,
Love from Sue
xxxx


Thursday 4 July 2013

Liam's Birth Is Close

For last 2 weeks Priscilla has been vomiting frequently and when she saw the Paediatric Specialist and high-risk team who will deliver Liam they found that his head is already in the engaged position and that birth is imminent.
Dr. Fiegel even suggested that she may begin labour at any moment now. This doctor has many years of experience and Priscilla likes him very much, she is so fortunate to have him looking after her. He has seen her through the PCOS (poly cystic ovarian syndrome) as well as Kyra and Megan's pregnancies. He also was there to deliver Kyra.
He wants to runs a test to see how well Liam's lungs are developed which will affect the treatment he needs at birth...the test is done by taking some amniotic fluid and you can read about that here.

So on Wednesday, July 10th Priscilla will go in at 8am for the sample to be taken and then she has a meeting with the High Risk Team led by Dr Huard who may decide to induce her there and then if they are happy with Liam's lung development.

Needless to say this a very stressful for Priss and Will and their families. They are so excited to be meeting this miracle boy but Priss has a long list of last minute preparations to get through all while being sick and very tired!
This pic was taken on Sunday...


So as always we ask that you keep Priscilla and her baby boy and family in your hearts and prayers, your support has got us this far and we appreciate it so very much.
Perhaps our next blog post we'll have some-one very special for you to meet!
Love from Sue
xxx

Friday 28 June 2013

Bloglovin'

It seems that to follow this blog come Monday you will need to click on the Follow Me in red print to the right of this page. Google Reader is closing down so come on over with us.

Priscilla is in considerable pain these last few days as baby and tumour press upon her spine. She is unable to sleep much but is taking a warm bath in the middle of the night to ease the pain.
Her doctor's have still not set a date for chemo to recommence or for when Liam will be induced so please hold her very close to your heart.

She took her little girls to the movies this week, Megan's first time...
" We saw the Croods. Was an animated film. Megan was an angel. Kyra not so much lol"

Love from Sue


Sunday 23 June 2013

Week 31 and Things Are Going Well

Just one day at a time and all of sudden we're at 31 weeks and looking forward very much to the arrival of our baby boy.




Priscilla has had a haircut and got sun-burned at the Zoo this weekend; we're hoping that the next few weeks go just as smoothly as the time so far.
Priss has also been busy cooking and caring for her family....this looks delicious...


Recipe for Lemon and Garlic Chicken

INGREDIENTS
6 tablespoons olive oil
2 lemons, 1 thinly sliced, 1 juiced
4 cloves garlic, minced
1 teaspoon salt
1/2 teaspoon freshly ground black pepper
3/4 pound trimmed green beans
8 small red potatoes, quartered
4 chicken breasts (bones left in, with skin, about 3 1/4 pounds)

DIRECTIONS
Preheat oven to 400°F. Coat a large baking dish or cast-iron skillet with 1 tablespoon of the olive oil. Arrange the lemon slices in a single layer in the bottom of the dish or skillet.

In a large bowl, combine the remaining oil, lemon juice, garlic, salt, and pepper; add the green beans and toss to coat. Using a slotted spoon or tongs, remove the green beans and arrange them on top of the lemon slices. Add the potatoes to the same olive-oil mixture and toss to coat. Using a slotted spoon or tongs, arrange the potatoes along the inside edge of the dish or skillet on top of the green beans. Place the chicken in the same bowl with the olive-oil mixture and coat thoroughly. Place the chicken, skin-side up, in the dish or skillet. Pour any of the remaining olive-oil mixture over the chicken.

Roast for 50 minutes. Remove the chicken from the dish or skillet. Place the beans and potatoes back in oven for 10 minutes more or until the potatoes are tender. Place a chicken breast on each of 4 serving plates; divide the green beans and potatoes equally. Serve warm.

Tuesday 11 June 2013

Oh it's coming soon.

Saw gynaecologist today and all is well :) baby L is growing very well and he is lodged head down, ready for take-off lol. Seeing him again in 3 weeks. He is contacting high risk unit as well as paediatrician to make sure all goes smoothly and that baby is ready, and that everything will be handled properly. We will probably have one more ultrasound and schedule delivery between 34-36 weeks. (Mid to end July). He wants to make sure baby won't be hospitalized for more than a month. Almost there, I'm feelin excited to finally meet him but also terrified because I know that I'm going to have to start chemo again and my life will become very hectic. So we will meet Mr. Miracle in 5-7 weeks. :) Thank you for all your prayers and well wishes as this pregnancy has gone a lot better than predicted. Doctors expected me to be bed-ridden by 20 weeks, I'm 29 and counting and still doing well. Can go for short walks once in a while still. Although I sleep a lot lol. Have gained 17 lbs so far which is great ;) Doctor is happy with the weight gain which was also a concern at the beginning.

Have a great day everyone
Xox
Priscilla.

Friday 7 June 2013

New Piccies of The Bump :) and Baby Wearing

27 Weeks

28 weeks
We've been talking about the idea of "baby-wearing", that is carrying Liam in a sling so that Priss's hands are free to do everything else busy young mums do.

Friends have kindly offered advice and I'm posting these links here to refer to and in the hope that some-one may also have some thoughts and suggestions...

Front wearing http://www.youtube.com/watch?v=sBBpzHe8pn4

Back wearing http://www.youtube.com/watch?v=x1bbupwGRHM

Mai Tai patterns, I like this simple one

Here are several more to look through

The Moby Wrap

Do you have experience of using these wraps? Any advice about where to buy them in Canada?
Looking forward to hearing from you as Liam will be born next month and will greatly benefit from this closeness to his Mum or Dad or Nan's and Aunties.

Thank you
Sue
xxx

Tuesday 7 May 2013

Latest news!

I know I haven't been posting much, but this pregnancy is making me much more tired then usual... I sleep a lot but baby boy is doing well :). Saw oncologist yesterday to see what the plans are.... They basically told me chemo will start 2 weeks after baby is born:( I feel upset about it because I was hoping for a little more time. But at least I get 2 weeks....  So baby will be born probably mid July. Maybe a little later depending on how baby boy is doing. His name will be Liam Terry Eli Adrien Kelly. Can't wait to meet him. Pregnancy is going well otherwise :). And lookin forward to Nana Sue and Grandad Joe meeting their newest grandchild when they come visit from Australia :) Can't wait. Will try to post more when I know what protocol they will be using. Doc said that Toronto hasn't given him any clue as to what chemo they will use. All we know is chemo and then surgery.

Lots of love. Xo
Priscilla

ETA Sunday's Bump Pic at 24 weeks...rather blurred but it shows that Liam is growing!


Sunday 21 April 2013

Catching Up

Priscilla's pregnancy is going along very smoothly now although very tiring as you can imagine. She continues to live each day to the fullest and is looking forward to warmer days and taking the girls out more.


16 weeks
18 weeks
20 weeks and Liam isn't the only growth, look at this carzy hair!!!
An ultrasound last week showed that Liam was twice his weight for his age so he is going to be a big baby!

Just look at this little sweetheart watching her Momma's meatloaf cooking, it was a great success apparently


Sending love and our best wishes to you all, thank you for your continuing support, it means everything.
xxx

Thursday 7 February 2013

Sharing Another Family's Thoughts About Cancer


From Crunchy Chicken's blog in the hope that her words will help those around Priscilla who are with her in this battle.

What to expect when your loved one has cancer


Kyra loves her snowman! She taught Megan how to say "pancakes" last night and Priss had a riot on her hands as they chanted "Pancakes for Supper!!" They enjoyed their pancakes with apple sauce...yummy!




Thank you from Down Under for all your positive comments, prayers and thoughts,
Love from Sue
xxx

Friday 1 February 2013

Lots to say.........

So lets start with the BIG news............. About a month and a half ago, DH and I found out we were expecting...... Last news I ever thought I would be posting I can guarantee.... As you may or may not know, I am very infertile. Both my daughters were conceived on Clomid. On many rounds of Clomid and depressing months of big fat negatives. To be honest, after 5 rounds with the last one, we were ready to give up and the test finally showed up positive!!!! We were happy. Plus doctors said that chemotherapy and radiation would void any hope of further children. We were OK with that, we have 2 beautiful girls, and to top this all off, we were using condoms as extra precaution.... So, you can all imagine the huge curveball that has been thrown at us to start with. Had an ultrasound about 3 weeks ago and baby is doing well and healthy. Very good news... Now as to if we can keep it???? Still up in the air, so positive thoughts and prayers are being requested.... In the department of chemotherapy and radiation, it has been enough time. But with today's new info, we are not sure...Doctor called me today to say biopsy results were in and contrary to what Toronto "assumed" the tumor is not dead...... It is alive and active.... Big punch in the gut there... They are unsure if this type of cancer is hormone sensitive as research has never been done on it due to the fact that children don't get pregnant and have an overflow of hormones, so they do not know if the tumor will start to grow faster or not, I guess we are on a watch and wait....... Argh! You can not believe how frustrated I am with Toronto and the fact that I feel like they are using me as a guinea pig.... How dare they assume things... The only reason the biopsy was done, was because when they told me that they wanted to take me off the narcotics I told them that it would not work because I am still in severe pain. So when I told them that they said that they decided to do more testing "in case" the tumor was still active..... Now Toronto is going back to the drawing board and suggesting and looking into surgery. I am seriously contemplating getting a second opinion, because at this point I feel like I have no reason to trust anything they have said or done.... I realize I am a rare case, but shouldnt they be covering all their bases? And not assuming things????? Anyways.... We are currently at 11 weeks gestation with an expected due date of August 24th.... One week after Princess Megan's birthday.... Lots of big changes happening for is.. maybe a 3rd child.... Kyra will be starting school in September. Possible surgery and maybe even chemo... Who knows what the future holds but seriously praying that things start falling into place and that 2013 is nocer to me than 2012.

Wishing all of you peaceful and happy times and trust me when I say this, never ever miss an opportunity to tell someone you love them.....Look at my situation its rough and when people tell me thry love me it definitely helps me get through the day.. Hopefully i can get my mind to shut off and get some rest.

Priscilla