The Blog for Team Lina in support of Lina Marie Palethorpe

Lina is NED

Team Lina — Fri, 22 Feb 2013 12:23:18 -0700

Yesterday was a great day for many reasons.

First we got great results from the scans and Little Miss Lina is considered in first remission :)

We never thought we would ever hear the three most important letters for any cancer patient

... NED = (no evidence of disease)

The 5% of tumour that were left after the surgery appear to be gone. One of her tumour

markers has dropped for the first time since surgery and is withing normal range again

(still at the very top end but within the normal range) the other one is still pending.

The oncology team encouraged us to celebrate and enjoy this very special

moment. It was been over two years of treatment and fighting and Lina finally

got rewarded. The neurosurgery team was a bit more on the cautious side
about being too excited.

So what does this all mean?

I discussed this question with our onc and with the neurosurgeon.

Both teams think that Lina still has cancer cells that are active but they are small and
won't get picked up by the MRI. We are also well aware that Lina is not on the save

side yet (if that even exists) but we are still super thrilled and we will enjoy this next step as long

as it lasts. May it last forever but if it does not last well then we will deal with the new

situation once we have to face it.

Lina will continue with treatment and we started round 6 of CRA yesterday.

David (our onc) sent Dr Yael Mosse, one of the leading nb researchers at CHOP an
email to discuss next treatment steps for Lina. Right now it looks like we might continue

with CRA but he is also looking to see if DFMO would be an option for Lina.

Mike and I met Dr Mosse at the ANR parent symposium last summer and we got

to discuss Lina's case with her. She also was the one who suggested to test her tumour

for the ALK mutation. We sent a sample of the tumour there to get it tested and it came back

negative. I am very happy David is discussing our next step with her as she is well aware of

Lina's case.

From a neurosurgery point of view the scans showed that there is less inflammation in the area
of the surgery and less fluid build up. The blood circulation in the area is still not that good and

we will not know if it will improve enough for her spine to accept the laminas until about 3 to 6 months from

now. Her left psoas muscle shows some atrophy and her spine looks a bit more kyphotic from

the last scan. These are things we will have to keep monitoring.

So for now we will continue with our treatment, start up extensive physio
again (we had to stop to get the inflammation in the spine down for the scan), concentrate on boosting

her immune system with homeopathic and naturopathic remedies and ENJOY this NED PHASE :)

I have to admit it has not fully sunk in yet and we are still in shock ... positive shock!

Yesterday was also a great day because we got to hang out with Laura and Theo in the oncology

clinic. Theo is doing great and he looks AMAZING. Just like Lina he is full of beans and does not
look like a sick child at all. He has not lost his hair yet. It was so great to see him and get to chat with Laura

who is so strong and positive. Our social worker commented on Theo and Lina being a special

breed of kid LOL ah well they come from a strong and amazing community :)

The next highlight was to meet little Miss Gabrielle. While I have followed her blog for a while now
and have heard lots about her from my dear friend Lucy, I had no idea she would steal my heart within a second.

She is a ham and I cannot stop thinking about her and her very lovely mom. We are planning to set up a play date for

our two girls as they are only a few months apart in age. I wish you could all meet her, she would sweep you

of your feet.

And last but not least I read that Jasmine's MRI came back clear yesterday and she is still cancer free, yay!!!!!

I briefly saw them in the hall way at the hospital, Rick yelled out for me but they were in a rush Rick pushing the wheel
chair Jasmine was sitting in running through the ambulatory building, they were having fun!!!!

I have to apologize that I did not spread the good news yesterday, I had planned to but I fell asleep (fully dressed) when

I put Lina to bed. I woke up at 3am and quickly changed into my pjs and continued my dreamless but very refreshing sleep.

I am so excited that all 3 Squamish kids are doing well and I can now finally focus on more awareness raising with the Gold

Ribbon campaign for this year and some other stuff that I have been involved at.

Thank you to all our amazing supporters, your positive words and vibes, your support and your prayers have helped

Lina reach her biggest goal NED.

Lots and Lots of LOVE from us!!!!
https://www.facebook.com/TeamLina

Crazy week to come

Team Lina — Sun, 17 Feb 2013 21:34:10 -0700

This coming week we will scan again, have a follow up appointment with the neurosurgeon and meet
with our oncologist.
I really don't know what to expect from the scan. Lina seems to be doing fine
most of the time but seems a bit more tired at times. If it weren't for her tumour markers
and her previous relapses that always followed the same patterns I would be way calmer.
But both Mike and I have a weird feeling and while a few weeks ago I was convinced
that she was relapsing again, I now just don't know. Maybe I am in denial.

I spoke to her onc this week and we came up with a bit of a "scan-plan"
The MRI will be on Tuesday. Should it show any new growth we will do a MIBG
and contact several nb specialists to find out what options we have left. Most likely these
options will not be in Canada. Our onc said "we will have to become creative with
her treatment and we will have to probably venture away from Canada for some trials"

Should the MRI show no growth and her tumour markers are lower or at least stable
we will continue with the Cis-retinoic acid and will do close monitoring of with tumour
markers and scans. This is of course our favorite scenario :)

Should the MRI show no growth but the tumour markers have continued to come up
we will have to do a whole bunch of tests and scans to see if the cancer is hiding in a new
spot. Unfortunately nb can spread anywhere, from soft tissue, to bones, to bone marrow,
to brain. we would most likely do most of the following scans and tests(MIBG scan, CT scan, bone marrow aspirates, possibly a brain scan, more blood work, 24h HVA, VMA collection ...)

We are of course hoping for lower markers and no growth but I just cannot seem to ignore
the fact that the tumour markers are behaving identical to the past relapses. Our oncologist is positive
but he says the tumour marker pattern concerns him as well and that with her history we have to be prepared.

Needless to say that my stress-level is on the higher side these days. We have been trying to keep
Lina away from any germs so that she does not get sick again which would put the MRI on hold
due to the risks involved with the anesthesia. There have been several events that we would have loved to join
but we just cannot risk for her to get sick right now.

We won't get results right away, but we are hoping that when we meet with the onc team and the neurosurgeon
on Thursday we will get some preliminary results at least.

Please keep Lina in your thoughts and prayers, we need a bit of luck right now
and some strong anti-cancer-growing-vibes!

Lots of love from us to you!!!

Fly high little prince

Team Lina — Sat, 09 Feb 2013 21:46:10 -0700

Today I am sad, today I am mad and today I feel at loss for words and I cannot stop the tears
as yet another beautiful and very brave little toddler earned his angel wings.
He fought so hard, he fought with a smile on his face, he hadsome close calls
and yet he was supposed to be fine. But he wasn't. The cancer was hiding in his body giving
everyone hope that the battle was won but it came back viciously.
His family fought with him with love, courage and hope and I am sending them all my love.
He passed away in their arms surrounded by love.
You will never ever be forgotten and you will always be in my heart. In the future when I hear the name - your name -
it will bring a smile on my face as I remember you smiling and kicking your legs and my heart will ache at the same time because you are missed so dearly by so many people and because your life was cut so short.

Fly high little prince, fly free, way above the rainbow to a land where cancer does not exist. I know you will be
a beautiful guardian angel for your sister.

Always in my heart xx

January 2013- a Summary

Team Lina — Thu, 07 Feb 2013 22:20:14 -0700

January 31

Poor Lina seems to have come down with a beginning ear infection. She was crying and telling me her ear hurts. So far she does not have a fever and the ibuprofen seems to be taking care of the pain. I took her to the doctor and she confirmed the ear infection. Lina is now on antibiotics for the next 7 days. I hope these antibiotics won't cause too much havoc with her digestion.

January 26

the tumour markers did not drop and while one did stay the same the other one which used to still be well within normal are now at the very upper end of normal.

January 23

We still are waiting for Lina's tumour markers to be entered into the system but as usual they take their time :( Our clinician keeps calling the lab but they must be short staffed as the markers are still not here. On the one hand I am in no rush as I am expecting them to be higher again on the other hand we need to know to be able to come up with a game plan.

January 15

We talked to our oncologist today and he shares some of our worries, not all of them ;) We will be doing a step by step approach we can always start running if we need to. First we will wait for this last set of urine markers that should be in mid next week. If they are higher again we will do a whole set of scans including a nuclear scan. If they are the same or lower we will start with the MRI and depending on the results we will do more scans. It is a tricky situation, if we scan too early any new growth might not show up yet, if we wait too long and the tumour might have a different pace than last time we might have given it too much time too get too strong. Scans are planned for the end of this month but I should get an exact date at the end of this week.
We will come up with a game plan if we have to after this next set of scans but I am already doing my homework just in case.
Waiting is not necessary my biggest strength but there never is a dull moment here. Today poor Frieda complained about a head ache in the morning so I called her school to say she would come in later. A few hours later she was all achy and had a 39*C fever. Now this sounds mean but I am really happy she got the fever first. So if (when)Lina gets it I know this fever is due to a viral thing and not due to her cancer acting up or due to a bacterial infection ....
I have once again changed my mind and I have decided that for us 2013 will start according to the Tibetan Calendar :) this gives us way more time to get and stay healthy.
on that note I better go and take my extra vitamins to hopefully avoid this one as well.

January 11

Our clinic visit on Thursday:
Lina was put on isolation but the doctors are positive that she is not contagious anymore. So why is she still throwing up? Because her gag-reflex is totally irritated first from all the chemo she has had and and now this virus hit her. We will keep her on gravol and ondensadron for a few days and then slowly wean her off to see if her tummy has recovered. Her electrolytes were good, her hemoglobin was it is highest, yay (and she is basically vegan), her platelets are great, her neutrophils are low but acceptable.
Lina had tons of snuggles with her oncologist and our nurse and yelled on the top of her lungs "Happy New Year Dr Dix, Happy New Year Karen" yup she loved it despite the fact that the lady from the IV team poked her 3 times, could not find a vein and decided to do a finger prick (I looked more like a slash). Lina then got to colour in her own chart while David (our onc) was scheduling her appointments for her next scans in a few weeks.
You would think we had a great visit and I would drive home pretty happy and relieved. I would have if it weren't for the tumour markers.
The markers have been slowly on this rise since October and one of the two has for the first time since surgery left the normal range. Not by much but for us it is the trend that counts. We have seen this all before within the same time frame.
We did markers again and should have the results within the next two weeks but I am under no illusion. We have not had a chance to discuss these results with our oncologist as he was in radiology rounds by the time the results finally got faxed through from VGH.

As you can imagine we are very worried that the monster is back and we have a lot of questions for our oncologist. So were do we go from here?
Well, I will email our onc and we will set up another appointment probably as soon as the next set of tumour markers are in, maybe even sooner. In the mean time we will try to enjoy life at its fullest plus some late night reading of clinical trials and other fun cancer stuff.

I just checked the weather forecast and next week is going to be nice and sunny which means we can distract ourselves with some much needed Vitamin D combined with some fun in the snow.

I hope you all have a great weekend with lots of fun, and love and laughter.

January 10

off to BCCH for her check-up and just in time she started throwing up again this morning at 6am. She is now doped with ondensadron and gravol for the car ride.

January 9

Lina is doing much better and is catching up on eating. So far she ate two bananas and some baby cereal. I think at this rate I won't have to worry about fattening her up ;) she will do it herself. We are back at BCCH tomorrow for blood work, tumour markers and some discussion about our next treatment steps and options.

January 8

We all got woken up by poor Lina projectile vomiting at 5am. She since has not been sick but still has diarrhea. She was pretty upset at 5am until she was in the tub. Happy times flooding the bathroom. Now we just hope that the diarrhea will go away. After she recovers from all this we will have some fattening up to do as the past 5 days have done more damage to her weight than 11 rounds of chemo. Mike is on the way to recovery by the looks of it and so is Frieda. I am still fine and hope it stays this way.

January 7

So far so good. Lina is feeling much better even though she still has severe diarrhea. Mike and Frieda had a rough night yesterday and both felt rotten for most of the day today. I am still feeling fine and I hope it stays that way. Thank you all for the support :)

January 6

I am the last one standing in the Palethorpe house :( everyone else is sick and I know it is just a matter of "when, not if" for me as well. Lina still has severe diarrhea and her wee bum is on fire.
She keeps drinking water and lets me syringe feed her some electrolytes here and there. I hope Mike will recover soon but for now I will be the nurse at home.

January 6
Lina woke up early this morning vomiting again but we since got it in control. She still has severe diarrhea and we will see how she is after her nap to make a decision if we take her in today or if she seems well enough so we can wait until tomorrow. She is still willing to drink water and we are syringe feeding her some electrolytes here and there. She also ate a few crackers (crackooos as she calls them) but she seems to be way weaker today. The rest of us (touch wood) are fine.

January 5

Looks like Lina has caught the Norwalk Virus. The vomiting seems to have stopped and the diarrhea has started. Thank you so much Helen for guiding us through the best approaches with this virus!!!! So far Lina is still drinking water and I don't want to jinx it but hopefully we can avoid a trip to the hospital if she stays hydrated. Again you would not know she is sick, she runs around the house and laughs at the funny noisy explosions in her diaper. As soon as we strip her down she demands a shower LOL. Fingers crossed we can get through this one without any complications

January 5

Can we count January to 2012 instead of 2013? We are hoping for a year of health but I might have to rewrite the calender and let the year start in February. January does not seem to want to start that well for Lina :( she has been throwing up all night and again this morning. She is a real trooper about it but we might have to have another trip down to BCCH. We just stopped the antibiotics two days ago and yesterday night she started throwing up. I just want to make sure this is a viral thing and not related to her bacterial infection. We also need to make sure that she can stay hydrated. Of course it is the weekend again and Lina only gets sick on weekends.

Two Years- 732 days

Team Lina — Sun, 09 Dec 2012 15:55:23 -0700

Two Years - 732 days

Two years ago today Lina was diagnosed with stage 2 intermediate risk neuroblastoma.
Two years ago our life changed forever. Lina has been in treatment for 732 days.

So is it a day to celebrate or is it a day to be upset? It definitely is an emotional day.
It has been quite the journey so far with many ups and many downs, many smiles and many tears - most of them shed on the inside
or at night. We have met amazing people, we have met the most inspiring little warriors. We have seen many get better but we have also
lost many that are now angles filling the sky.
We are so grateful Lina happy and feeling well, we a so grateful to have an amazing medical team here and from around the
world working with us, we are so grateful to live in such an amazing and supportive community. I have no idea how we could have
gone through the past 732 days without the support of YOU - people in Squamish and people from everywhere in the world.
We have learned so much over the past two years and we have experienced so much kindness and love.
For this we will be forever thankful!

Today there was a lovely fundraiser for Lina at MishMash in Squamish and while I had planned to tell Michelle about the "anniversary" I just
couldn't as I think I would have just been too emotional (I guess I could have blamed it on being scared of Santa).

The longer we travel this road the narrower it gets. Treatment options are very limited for childhood cancer. Lina's treatment options are very limited
and we are very grateful that the drugs she is on right now seem to keep the cancer at bay and hopefully mature the remaining cancer cells causing it to die off.
We had the uncomfortable talk with our oncologist about the "what if". What if the cancer starts growing again or even decides to spread?

He told us that we would have to get really "creative" and we would have to find a phase I or phase II trial that she would be eligible for. Most of these trials
would be in the US or Europe, non of these trials are covered by any insurance. The overall survival rate for phase I & II trials is about 4%. These trials look
at the toxicity of drugs. Lina's case has been tricky all along and we are fortunate that some of the best neuroblastoma researchers and doctors from all
over the world have looked at her case and at actual tumour samples.
There are not that many trials out there. But why? Childhood cancer is not rare. The more I look into the world of childhood cancer the more I am shocked at the simple thing it all comes down to "there is no funding for childhood cancer" and because there is no funding there is not enough research.

I now invite you take one hour of your busy life and watch the following documentary and tweet it, share it and share it over again. Lina is in it,
several of the most famous neuroblastoma specialists who have looked into Lina's case are in it and many families whose blogs we have been
following and whom we have had email contact are in it. I know you are busy and I know you would rather watch hockey (if it were on ;) ) or a movie
but I hope you will take the time and learn how simple it can be to totally transform childhood cancer. Mike posted about this on his facebook and
I couldn't say it any better so I am just going to quote him :) "Please take the time to watch this film. This is not just a US problem. Our family has been affected by this. We've consulted with some of these very doctors in the film and know the same realities facing these families. It could happen to anyone. It could be your kid, or your kid's kid. Plus for any Lina fans, Lina, Frieda & Kati make cameos at 29:25 & 30 mins."

Thank you for taking the time and thank you for joining us on our road to beating neuroblastoma cancer. Please share the link to the video and tweet it to as many people as possible.
Only through awareness things will change.

http://www.youtube.com/watch?v=oljTL1iuMmY

Great news :) stable or even a bit smaller

Team Lina — Sat, 10 Nov 2012 11:54:27 -0700

Lina was dancing and singing in the neurosurgery waiting room showing everyone that this surgery has not slowed her down one bit. The results from the MRI are really good. The tumour has not grown and it might even be a a tiny bit smaller (but most likely just the same). There is still a lot of fluid build up in the spinal column and around the spine from

the surgery and quite a few areas of the MRI are blurry. Everything looks like it is healing nicely though which is great. We won't know if the laminoplasty has fully worked until the bones are completely healed which will be in another 6 months or even longer. For now they look fine and this is what counts for me :) Lina had a blast and was happy to get her BCCH fix. We are back down tomorrow for physio at Kids Physio Group and Lina is all excited that she gets to go to her school (as she calls it) Thank you all for the love and support, sending out big smiles to all of you!!!!!

MRI and too many kids we know relapse

Team Lina — Sat, 10 Nov 2012 11:53:54 -0700

Thank you everyone for all the kind words! Lina did great at her MRI and since she is a frequent flyer everyone knows her and she enjoys the fame :) We won't know the results for a while as we will be discussing them with the neurosurgeon.
Lina requested to visit the oncology clinic after her scan and everyone was amazed by her running around wild with Frieda right after the anesthetics. I also g

ot a message that the "new style" of Team Lina hats has arrived which is very exciting. So far the day went great! You would think after such a successful day I write this post with a light heart but I don't. Two kids that we got to know who are fighting different cancers relapsed, one about two weeks ago and one today. For a long time we were the only ones we knew that had relapsed but the longer we travel this road the the uglier it gets and more kids we know that were fine for a while join us in the fight again. We feel fortunate to finally have turned a few good turns lately and we are positive that we are on the right path.

After hearing about Jeremy's relapse 2 weeks ago I was totally crushed and so sad for him and his family. He is younger than Lina and a true fighter with the sweetest smile and a super cute big sister.
Today I heard that Justin (a teenager) who was diagnosed a few weeks after Lina and who had been home for quite a while was airlifted to BCCH with a relapsed tumour.
While we were at BCCH today we bumped into one of our favorite doctors. He is not an oncologist but has been part of Lina's journey on two occasions. I always liked this doctor as he would make a point of stopping whenever he saw us to ask how Lina was doing and what treatment we were doing. Today this very humble doctor shared the story of his son, who lost his battle to neuroblastoma last summer at BCCH, with us. It was very moving to hear his son's story and I feel honoured that he shared it with us. This doctor is a real hero for me because even though he lost his son he keeps going back to BCCH to help make a difference for other families and save other kids.

A day like today leaves me with many different emotions.
I am thankful that Lina is doing great and that hopefully the cancer isn't doing well at all but at the same time I am sad for all the other kids that are newly diagnosed or even worse, who have to start the battle all over again. And I am angry that there is not enough funding for childhood cancer and that it is still considered "rare" when Childhood cancer is the #1 disease killer of children. More children die of cancer than of any other disease, including asthma, diabetes, cystic fibrosis, congenital anomalies and AIDS, combined.

So after being so immersed in the pediatric cancer world today I am even more determined to make a difference and to have a huge event or several smaller events to raise awareness next September. I am just gathering ideas and then try to get a team together to make it happen :)

Please pray or send positive energy down to BCCH there are so many kids that could use some positive energy no matter which ward they are on.

My house is all quiet now as everyone is fast asleep after a long day in the city and I will use this quiet peaceful time to distract myself with dealing with the new Team Lina merchandise.

Thank you for checking in!

Happy Birthday Lina

Team Lina — Sat, 20 Oct 2012 02:38:19 -0600

Happy Birthday Lina

Today is going to be an emotional day for many reasons.

Two years ago I met you for the first time, you chose to come a day early
even though we were told the day before that you would most likely follow in your big sisters footsteps and be late (quite a bit). You decided to pick a very special date (20.10.2010) and the only night that I had not slept at all. All I could think of when labour first started was "I want to sleep". Little did I know that sleep would be something I would have to miss for a very long time.
You were this small little baby (2960g, 52cm) that stole our heart the second we met you.
I pictured us 4 living like a "normal" family. The typical thing; chaos, happiness,
diapers, sleepless nights, way too many toys, hardly any adult time, lots of playdates, kids groups and and and
Some of this came true some of it turned out quite differently and never in the world would I have expected you had to fight for your life every single day! In your first two years of life you have endured more than most will ever have to endure and you smiled your way through it all. You have showed me what is essential in life, you inspire me with your strength and your happiness (minus terrible-two-accutane-combined moments ;) , you taught me more than any teacher or professor has ever taught me and you have made me so unbelievably proud you chose me to be your Mami!

I always thought it was a sign of "old-age" to wish someone health for their birthday but I was greatly mistaken! Health, especially in children is something that we quite easily take for granted unless life teaches us differently.

Lina, I wish you health and many many more reasons to giggle and laugh and love!

Happy Birthday Lina

We love you more than words can say!

Lina in numbers:

days alive: 732
days spend at the hospital: countless
rounds of chemo: 11
rounds of 13-cis-retinoic acid: 2 (4 more to go)
MRIs: 15+
CT scans: 4
ultrasounds: 4
MIBG scans: 27 (days)
general anesthetics: 22
hours being radioactive: way too many
GCSF injections: 150+
pokes: countless
blood pressure taken: countless
temperature taken: countless
bone marrow aspirates: 4
central lines: 3
surgeries: 1 biopsy, 3 central lines, 1 major spinal surgery to resect the tumour

Smiles: COUNTLESS

Scans = scanxiety =being normal"

Team Lina — Sun, 30 Sep 2012 00:29:53 -0600

Next week is scan week. Lina will have three days of scans Tuesday, Wednesday and Thursday in addition to blood work and tumour markers. I am already getting pretty nervous even though we just scanned 3 weeks ago. After talking to other nb parents they all told me that they are nervous every single time they have a scan even when their kid has been in remission for years. So I guess in my new "normal" world I am considered "normal" :)

Global TV

Team Lina — Fri, 28 Sep 2012 01:16:04 -0600

Here is the Global BC story on Team Lina and the gold ribbon project!

http://www.globaltvbc.com/video/childhood+cancer+awareness+month/video.html?v=2284611725&p=1&s=dd#video

Lina's Update

Team Lina — Fri, 07 Sep 2012 10:50:35 -0600

Lina just got out of the ICU after a long sleepless night. She was pretty uncomfortable and was drugged the max. It did not slow her down and she constantly got tangled in her 10000 tubes, cables catheters and the drain out of her back. She lost one nerve root on the surgery but the doctors told us that it barely functioned anymore anyways. We got our first smile from her puffy face today and she has been sitting, kneeling and trying to stand-up. We are waiting for a MRI today so she has to fast again all day :( . We are very relieved and Lina is finally resting a bit in mike's arms. Big tired smiles from us to you :-)

Lina's Update

Team Lina — Thu, 06 Sep 2012 20:27:52 -0600

Lina's update - Success! They got everything they wanted to, including 100% inner spinal to relieve the pressure on the cord. And everything on the outer, but it was hard to differentiate between tumor and muscle, so there may be some residual tissue to watch. Spine is back in place with joints intact & no fusing Lina is in the ICU in a lot of pain, but is moving around (very painfully) and is already looking a lot better after some Zzz's. It will be a long night ahead but we are all very relieved with the outcome so far. Thank you for all the support!

Lina's in OR

Team Lina — Thu, 06 Sep 2012 11:28:33 -0600

Lina has been in the OR since 8am this morning and will be so for another 5 hours at least. She will be in ICU afterwards and I will get to enjoy sleeping on a chair for the next few nights. The focus of the surgery has shifted a bit with the main focus being on decompressing the spinal cord which is under a lot of pressure from the growing tumour. They will still try to resect as much tumour as possible at this stage but she might need 1-2 additional surgeries in the next few weeks. These will be the longest hours of my life so it is actually a blessing that I cannot figure out how to connect to the Internet at the hospital - it has been keeping me busy and focused.

Insuflon

Team Lina — Thu, 16 Aug 2012 23:38:48 -0600

Lina and I are off to BCCH for blood work, a check-up and a new insuflon catheter tomorrow morning. Lina is still on GCSF but the little monkey took out her leg catheter (insuflon) on Monday. So for the past 3 days I have been injecting her with GCSF directly into her little thigh. She is such a brave and tough little girl and as long as mom and dad keep singing while pinning her down and injecting her with GCSF she does not cry.
Tonight Frieda wanted to help us distract Lina during the slow injection (this stuff stings quite a bit I was told by older onc kids, so the slower I inject it the less painful it is) As soon as Frieda saw the syringe and the needle she ran into her room and cried and would not stop. "I do not want you to poke Lina and I do not want Lina to get a "cut" in Toronto, and on and on it went. Even the fact that Lina was not crying during the injection wasn't very helpful for Frieda, she was just sad for her sister.
I hate injecting Lina directly into her thigh and the only way I can do it is by telling myself over and over that she needs GCSF in order for her counts to come up.
Mike's key role during the injection is to keep Lina still and suggest songs she might want to sing. Usually we have to sing "fincle fincle little dar" and "old mcdonald"

Needless to say all 4 Palethorpes will be very happy when Lina gets a new Insuflon tomorrow. Let's just hope Lina does not manage to rip it out again. I do not expect that Lina will get a blood transfusion tomorrow as her counts should not have dropped yet. I assume by next week she might need a top up.

I better pack some stuff for the clinic visit tomorrow :)

chemo round 11

Team Lina — Thu, 16 Aug 2012 23:35:41 -0600

We did a "half" round of chemo to tie Lina over until the surgery at the beginning of September.
No one expects shrinkage of her tumor but we are hopeful that the three days of chemo were enough
to keep the tumour from growing. Lina managed this round really well so far and we went home after only 4 days.

She contiues to amaze us on a daily basis and we are truly proud of our two girls

Thank you for checking in
:)

waiting

Team Lina — Thu, 02 Aug 2012 12:16:21 -0600

We were supposed to start round 11 of chemo today. But due to the latest scan Chemo is on hold for now and a CD with the latest scans are being couriered to Toronto today. So far it looks like there will be no further chemo as it does not seem to be working anymore but we are waiting for guidance from the nb specialists. The last shrinkage due to chemo was 6 rounds ago. The specialists and our team here will come up with a new plan asap but it looks like we might be flying back to Toronto as a next step. Originally surgery was planned for early September but they are now trying to have it done in August. The surgery will be way more invasive by the sounds of it. We are waiting to see what the team in Toronto thinks about the latest scan and the neurosurgeon can give us an idea about the different steps of the surgery. Until then we will have to practice our "waiting skills" We are very grateful for the amazing support of our oncologist here at BCCH, he is so understanding and supportive and truly cares about Lina and us! Rght now he is tryng everything to speed up the process.
Lina is doing well but is still pretty clingy and tired (which translates to "less busy").

thank you for all the amazing support, the lovely messages and thanks for checking in

I hope you all get to enjoy the nice summer weather :)

:)
Kati

emergency MRI

Team Lina — Thu, 02 Aug 2012 12:14:30 -0600

Tuesday

Lina is going for an emergency MRI tomorrow as her tumor markers are on the rise and we have been seeing more neurological issues over the last few weeks. Our original plan was to do another round of chemo and then scan again but due to our concerns we will scan again tomorrow. Should there be no visible change (everything under 10% of growth is not detectable) we will stick to our original plan and begin round 11 of chemo on Thursday. Should she be progressing we will need a new plan.

Thank you for all the support, it means so much to us!

I need a clone

Team Lina — Tue, 24 Jul 2012 01:41:24 -0600

could someone either cut me in half or make a clone of me ;) LOL
Both girls are feeling rotten. Frieda came down with a fever this afternoon and Lina's face and body colour is not even an off-white anymore (a true PALEthorpe, the palest we have seen her so far I think). Lina is also neutropenic so we are desperately trying to separate the two girls as Lina would be hospitalized if she were to spike a fever right now :( We closed the gate in the hallway and no matter on which side of the gate I am, it seems to be the wrong side. The sick child on the other side of me and the gate wants a piece of me as well. Mike and Oma are trying to fit as many snuggles in as possible but both my girls just want MAMA when they are feeling sick. Actually that's not exactly true, both girls would love to snuggle with me and each other. Lina kept yelling "Frie-da where are you" and Frieda yellew back from her "I am here but I am sick so we cannot kiss or hug"
Off to BCCH with Lina in the morning for blood work and I assume a transfusion. I am mentally preparing for a long day ...
Hopefully my poor and very brave and understanding Frieda girl is feeling better tomorrow. I know it is only a fever but I wish I could just stay with her all day tomorrow to comfort her.

Round 10 of Chemo

Team Lina — Tue, 24 Jul 2012 01:31:45 -0600

July 12

Lina's blood counts are too low but the doctors decided we will start chemo regardsless today as we cannot give the cancer any time or chance to re-group.

July 13

Just a quick update while Lina allows it :)
Day one of chemo went well but with her ANC so low Lina is not allowed in the playroom on the ward or any public places. She is also dealing with very low blood pressure again. We are lucky the ward has a nice deck and she is allowed out there as long as our social butterfly stays away from others (even other onc patients). Other than that she is pretty gaggy but in great spirits. Her chemo will start in half an hour and will be done in 4-5hours.

July 14
day 2 of chemo went well until about 9.30pm when Lina projectile vomited all over herself, my bed and me. Instead of being upset she started laughing though and we ended up with 3 nurses in the room laughing with us and her as it was everywhere. She enjoyed a late bath time and the rest of the night was uneventful. She is still pretty nauseous this morning and her blood pressure is still very low (72/36) but Lina is in a great mood. Thank you for checking in :)

July 16

Last day of chemo round 10. Lina is doing great and we are hoping to come up to Squamish tonight or tomorrow. due to Lina being neutropenic (=not having an immune system left) we are on isolation and cannot take her in public places. We can go for stroller walks. Please understand that we cannot stop and chat while on walks as Lina is not allowed contact with others. Lots of love

July 17

Coming home was a bit rough. Lina kept throwing up and I had to change her 4 times on the sea to sky. At the same time my mom called me and told me that one of our dogs was very ill and looked like he might not make it :( He is a little better now, we syringe fed him lots of water and some meds. He will be admitted first thing in the morning and might need surgery. I guess life would be just too boring for us without some extra drama, right? For now I am just looking forward to sleeping in my own bed :) Nighty night

Pinot is feeling much better thanks to Dr Armstrong. He had a huge mass on his throat and was not able to open his mouth anymore. The poor guy was in so much pain and had trouble drinking and eating for days. First we thought it was a tumour (just what we needed) but luckily it was highly inflamed and shut down saliva glands and we were gearing up for surgery. For once we were "medically" lucky and the antibiotics worked so well that we could avoid the surgery :) YAY
So now we just ned Lina's cancer to follow suit and start shrinking :) (very wishful thinking)

swimming in the middle

Team Lina — Fri, 06 Jul 2012 10:50:20 -0600

Hairloss and MRI results

We were waiting for the MRI all day yesterday and just when we thought we would
have to wait until Friday we got "the call"
It was not what we had hoped for as the tumor is unchanged and did not shrink.
We try to focus on the fact that it could be worse, the tumor could have continued to
grow.
The oncology team here thinks we should give it one more try and do one more round of this chemo
starting next week, but they will run this decission by the nb specialist in Toronto first.
I think this would at least buy us some time to come up with yet another plan.
As far as we know this would either be pretty invasive spine surgery (due to the bigger tumor),
proton radiation in the US or salvage chemo (which might only do damage to Lina and not work)
I guess we will deal with this decision after this next round and another MRI in about 4 weeks.

Lina's hair is starting to fall out again and I know it is our least worry but it still
makes me sad. She loves her new hair and wants to have it brushed daily. I guess with summer
finally here we will tell her that this is her nice and cool summer look.

Have a wonderful weekend and enjoy this beautiful sunshine.

:)