Lymphoma Website

ASCT Update

*Started the high dose chemo protocol last Friday for the Stem Cell Transplant. Am trying to do as much of the transplant as out patient so that I am able to be home with Brad and the girls, but that means we must keep a very clean and very healthy household. Also pray that i do not come down with any fevers or that no one in the house comes down with anything as well. On that note - another friendly reminder for the next while about not visiting (or have us visit you) if there are any illnesses about (no matter how minor it seems to you)...
I return tomorrow (Wednesday) for my next chemo then again daily from Friday until Wednesday for 24 hour infusions. I will have my Stem cells returned to me on Thursday and hopefully a steady recovery from there. It`s estimated recovery can take anywhere from 3 to 6 to 12 months ish to recover from this procedure.
Also as discussed previously - it is likely I will receive radiation and this will be discussed further with the specialist again on October 27th.
That's about all I have to update for now. As always, thanks everyone for the prayers, thoughts and support...oh - and of course the FOOD lol :)
Love the O`Neil`s

Some August Favs!

Beautiful girl after a hard days play!
Planning something?

Sister love - i love it!

Old time friend Alex and her two children came to visit us all the way from BC...It was nice to see them and catch up after SO many years!! This is us with Gabriel, Dimitri, Olivia and Alexia!

Olivia and Gabriel.

Playing at Gibson and Maguires place!

Alexia and Boyfriend,,,

Brothers...

Always fun in the bath!

Alexia at playtime for kids!

Olivia at playtime for kids...

Alexia at our park...

Olivia at our park..she's finally big enough to go on the big girl swings and she is so proud!

My sleeping angel...

Daddy and Olivia at the Ex...

Mommy and Olivia at the ex...

Trip to Omega Parc

The O'Neils

Updated info as i know it:

*Had CT Scan (to use as baseline test) last Thursday (results are complete, I'll find out the details of them next week)
*Had a Lung function test today to use as baseline tests and to determine the type of high dose chemo I will receive as a part of the transplant.
*Have an apt with a radiation specialist next Wednesday to discuss radiation options
*I am scheduled for my "Planning Session" next Thursday and will have firm transplant dates, but it looks like all will likely start that weekend the 28th/29th.

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I had a followup appointment last Friday at the clinic. I don`t know much more than I did before really. My blood work counts are currently extremely low (to be expected post chemo), so I am at risk for infection which means extra cleaning and hand washing at the O`Neil residence. I`m pretty tired right now due to the low blood counts but otherwise feeling OK. I`m pleased that i was able to tolerate the last chemo fairly well and again with little nausea (thanks to my magic pills). The stress of this all still plays hard with my emotions - but I'm managing best I can.

I should find out possibly Tuesday the dates for my next scan which will be used to determine how much further the tumor(s) have shrunk as well to use for baselines. I suspect the scans will be in about 2 weeks. I also suspect the week after that will be a meeting with the doctors to discuss the transplant which i am anticipated to undergo either the last week of August or first week of September.... We did discuss radiation again - and I will most likely receive some form of radiation as a part of the treatment this time around. Either total body radiation during the transplant or a determined course of radiation after the transplant. This will be discussed again after the scans and with a specialist.

The 7 days of the transplant protocol will be very difficult. I will undergo 7 days of chemo and an infusion of my stem cells back (as well possibly radiation). It will be the most toxic chemo i will have received yet. I will be left with no immune system and at very high risk for infections etc. I`m going to try and do as much of this as out patient so that I may spend most of my time at home if I am well enough. Days that I am not well enough I will be admitted to the hospital.

Like I said, I will be at high risk of infections due to my recovering immune system for a number of months after the transplant. I`ll remind everyone that during this time, it is SO important to not visit or have us visit if anyone is ill. Especially since we`ll be getting into flu season as well soon. Another challenge we`ll have is keeping Olivia well since she does attend daycare. We will likely keep her out of daycare if there are any illnesses there to try to avoid spreading them at home. We`ll play this by ear.


Brad will be taking some time off during the transplant to be with the girls as we continue to try and keep things as normal as possible for them during this time. We will be taking up everyone on their offers for help during this time as well.

Also, here's agood time to make a shout out (and great big huge THANK YOU) to our friends Andrea and Brad who drove all the way from Barrie, ON carting a number of coolers FULL of freezer meals!!! Our freezer is packed and that is awesome! Thank you EVERYONE from Barrie and Belleville who sent their homemade meals along - I understand there are meals that came from a number of households!!! Seriously - we appreciate the food!

The hair came off today. I though Olivia would be traumatized. She was totally fine...helped Grandma cut it and daddy shave it... We have been explaining to her about mommy`s hair falling out and why. She is mostly concerned if I will still have a head when my hair falls out. Good question - some days I wonder myself. We also shaved daddy's head - with a Mohawk!

So - time to enjoy the next 2 weeks as I don`t have to make any visits to the hospital as far as I know. Life can be somewhat normal for another two weeks. I look forward to hanging out with the girls as usual :)

MORE BIRTHDAY PICS from the second 3rd bday party!!!

Alexia was fascinated with the helium balloons!
The pool - always a big hit!!! (Jordan , Olivia and Gibson)...

Me with my Godson Wyatt...

...and with his baby sis, Sydney!

Baby Maguire!

Baby girl with daddy...getting out the bubble machine!

Mya and Olivia playing with the New Barbie Condo!

BFFs!

Alexia helping her big sis tear into presents - Alexia was right into it - it was very cute!

PRESENTS! Gibson gave Olivia an awesome frames collage of varies play dates they've had over the last 3 years - Super-cute!

...The cake and singing...

...friends Wyatt and Jordan playing....

Cutie COUSINS, Mya and Olivia

Auntie Nadia and her wee man Tristan...

Sisters:

Mommy and Daddy with our THREE year old:

FAMILY: Our children are so blessed to have such wonderful, caring active grandparents - THANK YOU all for everything you do for us and our girls!

The girls with Nanny and Grandpa:

The girls with Pops and Grandma:

Auntie Andrea and uncle Brads great ART work:

The Day of Olivia's 3rd Birthday

The group shot - ish...and mius one...lol

The kids from Olivia's daycare came over in the morning for a play and a lunch celebration! She was SO excited that her friends and Lisa were ALL coming over to HER house. It was cute. These are a great group of kids and they were so much fun to have over!

After lunch, getting ready to sing happy Happy Birthday and have cake! We also lit the candles 3 extra times so the kids could keep blowing them out!!! The highlight of the party!!!

Our snack luch and the cinderella decorations LOL

Playing at the Dora ship!!!

Playing on the Island!

...and in the pool!

*July 23/10 - Home from the hospital and doing OK. The nausea has been under control with the meds, the steroids keep my jittery and sleepless, but the mainthing is I'm back with my family and for now feeling OK.
This is a busy week as Olivia's bday is on Tuesday. Her daycare friends will be coming over for a play, lunch and cake. Should be fun. Saturday she will have a separate party with her other little friends - can't wait!
I'v also made the decision that what's left of my hair (which is literally strands) needs to come off this week, so from then on in it will be Au natural, party hair and scarves...oh to have so much choice! lol
My spirits are OK, nervous how close it is till transplant time. My understanding is that I'll have some baseline scans done in about 3 weeks then go into the SCT (more chemo and the infusion of cells) - Then we cross our fingers. Not sure what the stand on radiation will be for after - we'll cross that bridge when we come to it I guess.
Everyone have a nice weekend.


*I will be admitted to the hospital sometime on Sunday for about 3 days to receive my next round of chemotherapy. I likely will not be discharged until sometime on Wednesday. It`s the longest I will have been away from my kids which breaks my heart. I plan to drug myself heavily for three days so that i may sleep through the sadness (being away from home) and the emotions this whole process (ie the self poisoning) brings me.
Brad will be off Sunday until Tuesday with the girls. I hope he will stay patient with them (as he is not typically with them for this length of time, 2 at a time and on his own). I also hope he will ask for help when he needs it (ie in the evenings) - 5am till 9pm make for a long long day even when both girls are on their best behavior. It is rewarding - just long and often tiring. I feel trapped knowing that i will not be here doing MY job.
Think of us and wish us luck.
The O`Neil`s xo

Olivia's photoshoot!

Olivia and I had a blast getting ready and going to the photo shoot! She was really getting into it! Her 3rd birthday is just around the corner and here are the photos to commemorate it!