Saturday, 3 November 2012
Good news for Gracie
Gracie's ultrasound is clear and her chest xray looks to be clear as well. This is a little unmomentous for us, as we have had so much roller coaster in our lives I find myself waiting for the uphill climb again. What I do know is that we have managed to go and live when we have gotten news like this in the past, it is almost like a "ready, set...GO" kinda thing. And live we have and are, we are heading to
Monday, 15 October 2012
Scans, tests and more scans
Gracie's scans were not clean, so to say, but it was not all bad, her lymph nodes keep lighting up on the PET scan, which can be quite concerning, but she has been not feeling well at the time of both of her PET scans, being this latest one and the one prior (when we are sick even with a cold our lymph nodes will enlarge). So we don't really know what to do with these results. The consciences has been that we will do nothing, we will not biopsy in other words. We also believe that maybe the PET scans are not working for us anymore and we will have to rely on another diagnostic tool. That being said we are waiting to see when we will schedule a CT Scan or ultrasound or both.
In the meantime, Gracie really hasn't been feeling well so after a long political battle with ACH (Some of the Dr.'s up there feel that we should be transferred out to short term and back to the care of our family Doctor as Gracie is a year post transplant, however her Oncologist does not want to do this yet as we have not had clean scans, so we are often met with a "what are you doing here" attitude from the rest of the Oncology team - it is frustrating and confusing for us as well as a little humiliating, but we are getting used to navigating the political mine field of our health care system), so finally, thanks to one of our favourite Doc's up there she was seen last Monday only to be diagnosed yet again with pneumonia. It is crazy whet you get grateful for and I was grateful that I was able to get her seen by someone who cared and that the pneumonia had not advanced as much as it did this time last year so it was only high doses of antibiotics and not another five days on the ICU ward.
She is coming around, but has gone back to taking a nap and the dreaded su-su (soother) is back, much to our chagrin as we had worked so hard to get her to give it up finally. Probably not a big deal to alot of people reading this, but it is a good feeling when you have something that can be in your control.
It is also with such sadness that we had to say yet another round of good-byes to two amazing kids from our journey, they have definitely earned their wings and I hope they soar high, free from pain and suffering and endless hospital stays. Ty Sparks and Jacey Uphill you will forever be etched in our hearts and in our minds.
Its disconcerting that a place I found so comforting and safe has now become so depressing and sad. ACH represents to me, now, a place of loss and sadness, there is no longer anyone there that I know, staff has changed and most of the children we were close to have passed on, it leaves me with such a heavy heavy heart.
I am sorry for not being more prompt in my posts, I will try to be better.
Take care...
In the meantime, Gracie really hasn't been feeling well so after a long political battle with ACH (Some of the Dr.'s up there feel that we should be transferred out to short term and back to the care of our family Doctor as Gracie is a year post transplant, however her Oncologist does not want to do this yet as we have not had clean scans, so we are often met with a "what are you doing here" attitude from the rest of the Oncology team - it is frustrating and confusing for us as well as a little humiliating, but we are getting used to navigating the political mine field of our health care system), so finally, thanks to one of our favourite Doc's up there she was seen last Monday only to be diagnosed yet again with pneumonia. It is crazy whet you get grateful for and I was grateful that I was able to get her seen by someone who cared and that the pneumonia had not advanced as much as it did this time last year so it was only high doses of antibiotics and not another five days on the ICU ward.
She is coming around, but has gone back to taking a nap and the dreaded su-su (soother) is back, much to our chagrin as we had worked so hard to get her to give it up finally. Probably not a big deal to alot of people reading this, but it is a good feeling when you have something that can be in your control.
It is also with such sadness that we had to say yet another round of good-byes to two amazing kids from our journey, they have definitely earned their wings and I hope they soar high, free from pain and suffering and endless hospital stays. Ty Sparks and Jacey Uphill you will forever be etched in our hearts and in our minds.
Its disconcerting that a place I found so comforting and safe has now become so depressing and sad. ACH represents to me, now, a place of loss and sadness, there is no longer anyone there that I know, staff has changed and most of the children we were close to have passed on, it leaves me with such a heavy heavy heart.
I am sorry for not being more prompt in my posts, I will try to be better.
Take care...
Scans
Tailspin it was. I was asked once if a brand new diagnosis was more devastating than a relapse and having been through both, I can say they are equal in so many ways but different in the way your heart wrenches. Maybe if it is a new diagnosis there is so much hope or despair, or fear of the unknown. But with a relapse I can honestly say, it rips your heart out because you know what lies ahead. You don't know that with the beginning.
So once you get to the "remission" stage, which I will say with clarity every cancer patient young or old, hates this term, so much so they have phased it out of all medical lingo, you live in limbo. If I had 5$ for every time some said to me "arent you glad its over?" I would be a rich woman, what these people don"t undestand, which was stated in my blog of _______________ it is never over, it will never be over. The only time it is over is when it is truly over and they have gone to Gramma in Heaven. She wants to visit her Gramma in Heaven she says it repeatedly, maybe she is trying to say something to sus.
Signs of lymphma:
Restlesness;
undecidenness
weakness
nught sweats
high lhl levls
and I really dont blame her, so would I, but I am not r
ady yet. I need to see her first, it is the way it is supposed to be, and in some way I will make sure that is the way. It is my job to
So once you get to the "remission" stage, which I will say with clarity every cancer patient young or old, hates this term, so much so they have phased it out of all medical lingo, you live in limbo. If I had 5$ for every time some said to me "arent you glad its over?" I would be a rich woman, what these people don"t undestand, which was stated in my blog of _______________ it is never over, it will never be over. The only time it is over is when it is truly over and they have gone to Gramma in Heaven. She wants to visit her Gramma in Heaven she says it repeatedly, maybe she is trying to say something to sus.
Signs of lymphma:
Restlesness;
undecidenness
weakness
nught sweats
high lhl levls
and I really dont blame her, so would I, but I am not r
ady yet. I need to see her first, it is the way it is supposed to be, and in some way I will make sure that is the way. It is my job to
Wednesday, 12 September 2012
Scan day
Well here we are at scan day yet again....it is always with such trepidation I anticipate these days and the days that follow as we wait for results. It is a double whamy though with the one year anniversary of Grant's passing and our friend Ty's passing both this week; these events have a way of pulling you right back into hell.
We have had a great summer, we have been camping almost every weekend at a seasonal spot quite close to home. It doesn't hurt us at all that one of the other seasonal campers next to us is a Emergency Room Nurse, brings much comfort. Gracie absolutely loves this, and if you ask her if she wants to go to the trailer, she will drop anything she is doing, including eating chocolate, and run to the car. She started Preschool last Thursday and is so excited about it, it is a proud Mommy moment for sure. The only thing she was disappointed about was that she didn't get to go by herself and that she didn't get to ride the yellow bus.
One of our biggest concerns about Gracie was her social skills. Being so withdrawn from people for so long, we thought she may be quite clingy and shy, well it is with positive affirmation I say this id definitely not the case. She makes sure she knows everyone's name and talks to them like a tiny adult. She approaches other children with kindness and sparkle, she was definitely a leader in her preschool class on that first day. Don't get me wrong, perfect she is not (is anybody?) she still has the three year old attitude with all the crap that goes with it, but she definitely is not shy and she has a gentle soul.
This day will be long as she cannot eat or drink anything and her scan is not until 3. But I can't help but feeling it so pales in comparison to what other people have had to endure, or are enduring as I write this, my thoughts will always be with you.
Will post the results as soon as we know.
Love The Sterks
We have had a great summer, we have been camping almost every weekend at a seasonal spot quite close to home. It doesn't hurt us at all that one of the other seasonal campers next to us is a Emergency Room Nurse, brings much comfort. Gracie absolutely loves this, and if you ask her if she wants to go to the trailer, she will drop anything she is doing, including eating chocolate, and run to the car. She started Preschool last Thursday and is so excited about it, it is a proud Mommy moment for sure. The only thing she was disappointed about was that she didn't get to go by herself and that she didn't get to ride the yellow bus.
One of our biggest concerns about Gracie was her social skills. Being so withdrawn from people for so long, we thought she may be quite clingy and shy, well it is with positive affirmation I say this id definitely not the case. She makes sure she knows everyone's name and talks to them like a tiny adult. She approaches other children with kindness and sparkle, she was definitely a leader in her preschool class on that first day. Don't get me wrong, perfect she is not (is anybody?) she still has the three year old attitude with all the crap that goes with it, but she definitely is not shy and she has a gentle soul.
This day will be long as she cannot eat or drink anything and her scan is not until 3. But I can't help but feeling it so pales in comparison to what other people have had to endure, or are enduring as I write this, my thoughts will always be with you.
Will post the results as soon as we know.
Love The Sterks
Sunday, 24 June 2012
It has been so long since I posted anything, that the whole format changed...Wow. I kind of fell apart on my posts after the loss of a few of the most exceptional people I have ever met, and our lives went so well. It felt selfish to even comment on our lives. How come everything is going good for us? Why? Trust me I know I am not that great of a person to deserve some peace, accompanied by life.
This is not about my grief or my feelings but I found it it hard, hard to be happy, because two people whose lives were cut short kept dancing in my head. I found it hard to articulate what I felt, because those children were not mine, how is it possible that I felt so bad, but my child was doing so well? Life becomes wierd, I would like to use the word "hard", but it is so overused by the norm, that I find weird a better word. Hard, all life is hard, hard is easy if you know what I mean.
Gracie is doing great, she is a bundle of energy, and I would be lying if I didn't say I am waiting for our world to crash but so far it is not, and that is great. She is hilarios, she oftens says "Mamma, my tummy hurts I am going to sick I need a bowl", well I scream around like a crazy woman, hoping to avoid the olive green tupperware bowl of my past and get her something only to hear her say "nope , not today", what does a Parent do with that?
So I decided to write again after a great chat with a good friend who has just lost her Cousin to a car accident, Saturday night. This conversation left me reeling, I felt I was no help to my friend, as usual, I didn't know what to say, so I babbled about my own issues. This is what I felt, this young woman's loss is so tragic, but it is doubly so because just over 20 years ago my friend watched her cousin succumb to lukemia (so a Mother loses her child only to lose her Grandchild to a unfateful care accident, really how much could one family endure?). This is where I question my Spirituality. I have spent time with my friends Mother (who happens to be a volunteer with Child Life) and although I never got the chance to say "thank-you", I wish I could now. I wish I could give her some comfort in her time of loss. Mrs. "V" I will be forever grateful, my heart pours out to your whole family.
I think it is the loss of this young womens's life that spurred me to write on this blog again, this and a few people who have encouraged me. The loss for this family makes me enraged, for lack of a better word. This and all the other family's I have seen who have to deal with the unfair loss of a child, be it a 2 year old or a 22 year old. It is not right. I know some people who will think that they can empathize because they have lost a Grandmother, or Grandfather, or albeit a Mother (RIP Mom), or Father, or a Dog (RIP Abby), losing a child is unnatural and you should never comare it to anything, because you have never lived it, and God forbid you ever, just remember people will remeber not what you did, but how you made them feel. A hug can go a long way if they are ready. If that person (like me) isn't touchy feely, then being in the background is awesome. They will probably surprise you in a few years and say I "remember you being there", that goes further than you will ever know. The best peice of advice I ever got from my own Mother, when my best friends Mother, Nancy, died was "if you don't know what to say, don't say anything, and if you don't know what to do, do nothing, just be there..."
This is not about my grief or my feelings but I found it it hard, hard to be happy, because two people whose lives were cut short kept dancing in my head. I found it hard to articulate what I felt, because those children were not mine, how is it possible that I felt so bad, but my child was doing so well? Life becomes wierd, I would like to use the word "hard", but it is so overused by the norm, that I find weird a better word. Hard, all life is hard, hard is easy if you know what I mean.
Gracie is doing great, she is a bundle of energy, and I would be lying if I didn't say I am waiting for our world to crash but so far it is not, and that is great. She is hilarios, she oftens says "Mamma, my tummy hurts I am going to sick I need a bowl", well I scream around like a crazy woman, hoping to avoid the olive green tupperware bowl of my past and get her something only to hear her say "nope , not today", what does a Parent do with that?
So I decided to write again after a great chat with a good friend who has just lost her Cousin to a car accident, Saturday night. This conversation left me reeling, I felt I was no help to my friend, as usual, I didn't know what to say, so I babbled about my own issues. This is what I felt, this young woman's loss is so tragic, but it is doubly so because just over 20 years ago my friend watched her cousin succumb to lukemia (so a Mother loses her child only to lose her Grandchild to a unfateful care accident, really how much could one family endure?). This is where I question my Spirituality. I have spent time with my friends Mother (who happens to be a volunteer with Child Life) and although I never got the chance to say "thank-you", I wish I could now. I wish I could give her some comfort in her time of loss. Mrs. "V" I will be forever grateful, my heart pours out to your whole family.
I think it is the loss of this young womens's life that spurred me to write on this blog again, this and a few people who have encouraged me. The loss for this family makes me enraged, for lack of a better word. This and all the other family's I have seen who have to deal with the unfair loss of a child, be it a 2 year old or a 22 year old. It is not right. I know some people who will think that they can empathize because they have lost a Grandmother, or Grandfather, or albeit a Mother (RIP Mom), or Father, or a Dog (RIP Abby), losing a child is unnatural and you should never comare it to anything, because you have never lived it, and God forbid you ever, just remember people will remeber not what you did, but how you made them feel. A hug can go a long way if they are ready. If that person (like me) isn't touchy feely, then being in the background is awesome. They will probably surprise you in a few years and say I "remember you being there", that goes further than you will ever know. The best peice of advice I ever got from my own Mother, when my best friends Mother, Nancy, died was "if you don't know what to say, don't say anything, and if you don't know what to do, do nothing, just be there..."
Saturday, 26 May 2012
Life is good, confusing all the time, but good. I can honestly say that over the last three months we have LIVED, we have been able to make plans and keep them, we have swan, been in gymastics lessons ( which I dont think she likes), and camped alot. Life is normal, whatever that means. Chaotic is good! The differences being is when we are asled fr immunization records yes she maybe canpt gp, not because I dont ahev them but because she doesnt have them , if that makes any snese. She has to be treated like a newborn as far as immunizations so she will start the 6 months at almost 4. We ahve not decide if we will give these to her, as she seems to be out in pblic just fine,
Monday, 2 April 2012
All results and surgery over!
Wednesday was a day of celebration for us as we were told by our Oncologist to go and live our lives. I am not much of a cryer but I cried, I cried alot. I really never though we would get to that day, I never thought I would hear those words. I look back at our last 22 months and realize what a mountain it was. I went into a defence mode of sorts where I only looked a day ahead and sometimes when we were in really dark places an hour or two ahead at a time. You can't help but feel like there is a big "but" waiting. I have decided though that we will live, and live we will until the next test which should be in June, a CT scan. There may be an issue with some of her lymph nodes, but nothing compared to the past.
Her dental surgery went without a hitch on Thursday and we only ended up removing four teeth, the rest of the decay was treated with fillings, and of course she has spacers in so when she opens her mouth she looks a little like "metal mouth". The surgery lasted three hours and her recovery a couple of hours, we were home by 3. She ended up sleeping until 6, and then woke up her usual spicy self, however she ended up awake at 2 asking for eggs, did take me back to those steroid days in the hospital. I fell back asleep but she ended up bugging her Dad and went back to sleep on the couch.
We celebrated a bit over the weekend and now life begins. Trying to get Gracie on a bit of a normal schedule and we start Gymtastics next week and swimming lessons in May.
Thanks to all who have followed our journey. I probably will not post very much in the next few months, but will update in June when we do our CT Scan.
Have a great Spring everyone!
Love The Sterks
Her dental surgery went without a hitch on Thursday and we only ended up removing four teeth, the rest of the decay was treated with fillings, and of course she has spacers in so when she opens her mouth she looks a little like "metal mouth". The surgery lasted three hours and her recovery a couple of hours, we were home by 3. She ended up sleeping until 6, and then woke up her usual spicy self, however she ended up awake at 2 asking for eggs, did take me back to those steroid days in the hospital. I fell back asleep but she ended up bugging her Dad and went back to sleep on the couch.
We celebrated a bit over the weekend and now life begins. Trying to get Gracie on a bit of a normal schedule and we start Gymtastics next week and swimming lessons in May.
Thanks to all who have followed our journey. I probably will not post very much in the next few months, but will update in June when we do our CT Scan.
Have a great Spring everyone!
Love The Sterks
Tuesday, 20 March 2012
Biopsy Results
I am writing this on the fly, because based on everyone's calls, texts and emails everyone is concerned. We did get the results we wanted. They believe that the lymph nodes are "lit up" because of something viral. We have not gotten the official report as they have sent them for further testing just to be sure, but Dr. Ron looked at them with the pathologist and he said that they do not look like T-cell lymphoma cells. It is all very complicated so I will spare you all the details, but basically they do not look cancerous. We will get everything for sure next Wednesday.
It has been a trying couple of weeks for us and we have been on pins and needles as this took longer to come back than most of our other results, for reasons I understand but will not elaborate on. So we feel like we can plan our lives a bit, but we are doing this with some trepidation as it feels maybe too good to be true. I know that in the past I have been accused by some of being negative and having a bad attitude towards these good results, but before you judge our reactions I do ask that you walk just a week or maybe a month in our shoes first.
So in a nutshell "HAPPY SPRING", I must go in order to start planning! I am making lists (Jen I know you would be so proud) and checkin them twice as we start to truly be able to plan to enjoy our summer coming up. We have our dental surgery next Thursday and hopefully I do not need to see another anaesthesiologist for a long, long time.
Take care and love to all.
The Sterks.
It has been a trying couple of weeks for us and we have been on pins and needles as this took longer to come back than most of our other results, for reasons I understand but will not elaborate on. So we feel like we can plan our lives a bit, but we are doing this with some trepidation as it feels maybe too good to be true. I know that in the past I have been accused by some of being negative and having a bad attitude towards these good results, but before you judge our reactions I do ask that you walk just a week or maybe a month in our shoes first.
So in a nutshell "HAPPY SPRING", I must go in order to start planning! I am making lists (Jen I know you would be so proud) and checkin them twice as we start to truly be able to plan to enjoy our summer coming up. We have our dental surgery next Thursday and hopefully I do not need to see another anaesthesiologist for a long, long time.
Take care and love to all.
The Sterks.
Wednesday, 14 March 2012
Scan Results
Ok so last Thursday went really smoothly, if you want to discount getting an IV and a two hour recovery on ward smooth, then smooth it was. We have now got the results of that and the good news is that there is no signs of anything in her skin. There are no masses anywhere! This is a big YEAH!
But, yes the big BUT there is something now in her lymph nodes, there were four of them that "lit up". So we don't know what these are as a PET scan only shows hot areas, not why they are hot. These were never there in any of her previous biopsy's. It is so hard with these little guys to know that everything you have done to them to get them well, will not eventually end up making them sick, again. They are hoping that this is a post viral thing and this is why they are "lit up". The only way to tell is to do a biopsy as waiting another 4-6 weeks for a PET is something they say they cannot do, in case it is not post viral.
So here we are in a holding pattern once again and I find myself holding my breath again. We have some more meetings up at Children's tomorrow and then hopefully Friday they can do a biopsy, maybe even Saturday (they clearly want this done fast - or Saturday would never have been mentioned!). We hope that this will be easily identifiable and not have to be sent back to Austria as the first one was.
Will keep you all posted.
Love The Sterks.
PS: Added some pics of Gracie with her crazy hair, along with her and I in Fish Creek. Gracie was riding her ever favourite, her red Radio Flyer.
But, yes the big BUT there is something now in her lymph nodes, there were four of them that "lit up". So we don't know what these are as a PET scan only shows hot areas, not why they are hot. These were never there in any of her previous biopsy's. It is so hard with these little guys to know that everything you have done to them to get them well, will not eventually end up making them sick, again. They are hoping that this is a post viral thing and this is why they are "lit up". The only way to tell is to do a biopsy as waiting another 4-6 weeks for a PET is something they say they cannot do, in case it is not post viral.
So here we are in a holding pattern once again and I find myself holding my breath again. We have some more meetings up at Children's tomorrow and then hopefully Friday they can do a biopsy, maybe even Saturday (they clearly want this done fast - or Saturday would never have been mentioned!). We hope that this will be easily identifiable and not have to be sent back to Austria as the first one was.
Will keep you all posted.
Love The Sterks.
PS: Added some pics of Gracie with her crazy hair, along with her and I in Fish Creek. Gracie was riding her ever favourite, her red Radio Flyer.
Sunday, 4 March 2012
The Lion King and a PET Scan
Anybody who knows me well knows that I am a movie freak. I can watch 4 movies back to back without blinking an eye, well at least I used to. So when we talk about momentous occasions in our children's lives people think first words, first steps, first teeth. Well forget that, our momentous occasion came in the form of popcorn, The Lion King and a toddler who actually, yes actually laid down and watched this! Some of you are probably thinking, she has never watched a movie? Yes she has numerous times, but this, in my mind, was an actual movie, no it was not a Johnny Depp masterpiece or anything but it was a movie that did not involve the Backyardigans, Curious George or Dora. It actually had a plot that did not involve a magic backpack. Now be it that we had to fast forward through the scary parts, which involved any scene where the colours were a little muted so our 90 minute movie turned out to be about 45 minutes, but hey beggars can't be choosers. I was able to actually lay down on a couch (yes lay down) and I did not get any toddler feet kicking me in the head, or demands of milk every five minutes nor was I even asked to dance. This people was a momentous occasion. I know that I do not want her to grow up to fast, but if she could replace Dora with Meryl Streep, the Backyardigans with the Ocean's Eleven Crew and Curious George with Al Pacino or Matt Damon, we would be in business and then I don't care if she ever hits any other milestone, my life would be complete, a forever interested movie watching companion, yes yes life would be good.
It is PET Scan time again, albeit two months late thanks to the Anaesthesia team up at children's being "too busy" to go to Foothills to allow her to have her scan, and our oncology team fighting hard for her, only to have to go to the head of the food chain once again in order to get it done. Don't even get me started to what that does to a Cancer Mom's psyche. So we are set for March 8 (Thursday) at 1 p.m. I hope in my heart of hearts nothing goes wrong to mess this up, as it so often can. She has been sleeping more than usual this past week and that leads them to believe that she has been fighting a (mild) virus we did a chest xray in order to rule out anything pneumonia like (refer to the last time she got put under anaesthetic and we ended up in ICU with pneumonia) all came back clean. However it kiaboshed our plans for the weekend and we ended up not doing a whole hell of alot.
Once again we sit on egg shells waiting for Thursday and not wanting to really think about it at all. I don't know how to stress how hard scan times are on Cancer families. Like I said in one of my other posts, you load the barrel of the gun and spin it one more time and hope to God it does not fire.
I hope all is well in everyone's world and wish everyone well. Will update once we receive the results, or if Gracie happens to sit through "The Help" in which I will be over the moon.
Love The Sterks
It is PET Scan time again, albeit two months late thanks to the Anaesthesia team up at children's being "too busy" to go to Foothills to allow her to have her scan, and our oncology team fighting hard for her, only to have to go to the head of the food chain once again in order to get it done. Don't even get me started to what that does to a Cancer Mom's psyche. So we are set for March 8 (Thursday) at 1 p.m. I hope in my heart of hearts nothing goes wrong to mess this up, as it so often can. She has been sleeping more than usual this past week and that leads them to believe that she has been fighting a (mild) virus we did a chest xray in order to rule out anything pneumonia like (refer to the last time she got put under anaesthetic and we ended up in ICU with pneumonia) all came back clean. However it kiaboshed our plans for the weekend and we ended up not doing a whole hell of alot.
Once again we sit on egg shells waiting for Thursday and not wanting to really think about it at all. I don't know how to stress how hard scan times are on Cancer families. Like I said in one of my other posts, you load the barrel of the gun and spin it one more time and hope to God it does not fire.
I hope all is well in everyone's world and wish everyone well. Will update once we receive the results, or if Gracie happens to sit through "The Help" in which I will be over the moon.
Love The Sterks
Saturday, 18 February 2012
Friday, 3 February 2012
Updates
Gracie's scans have been postponed once again. Somewhat because those liver enzymes continue to be high however they feel that this is due mainly to the cold she had. They are coming down alot but not back to normal. Dr. Ron wants to now wait on the scans so that we don't get a "false positive". That is the best layman's terms that I know how to explain it. The other reason and more pressing reason is that we are once again caught in some political crap up at Children's. Anaesthesia is now refusing to go over to do any PET scans at Foothills on children as they do not have the resources. This I do understand as they have to send a team over and it is a four hour procedure of which most of it is spent sitting around and waiting. So we will wait to see if the situation is resolved, if not then I think we will maybe request to go to Edmonton to get it done and see if we can get around all of this that way.
The loss of Charlotte Amsing on January 17 brought me to my knees. I found myself checking the Amsings blog at all hours so of the day and night, only to be told by my friend Mel who also lost her son Grant. It seemed so ironic to hear it from her. My heart bleeds for Allison, Rob and Yolanda. I do know that Charlotte was a gift from Heaven. And if I knew at all what to say to this family it would be that she was blessed with parents like Allison and Rob and a big sister named Yolanda who gave her the best of themselves with every breath they took. There are alot of kids out there that don't get half that much. I hope they hold their heads high and know that they gave everything they could to Charlotte and she had a better 3 years than some kids ever will ever see. She will always remain in our hearts and memories, she was a bigger part of our journey than they will ever know. Hop Hops and butterflies.
Gracie continues to thrive, she is hilariously funny and sings so loud it could make you pull out the ear plugs if it wasn't so cute, so all is good . I have been invited to go back to work part time, and only for a few weeks until they find a replacement, but you know it feels good to know that people believe in you enough to say hey can you do this after two years away and drop a lap top in your house and say I feel confident in you. It does wonders for your psyche.
Life is crazy busy with all of the above and with the care of my Dad, who continues to decline in health. He is in a good spot now, put his health continues to decline at a little bit of an alarming rate, so with Angela and Roy's help we try to bring him as much dignity and quality of life that we can.
We have been asked to be part of the Radiothon for ACH. Which airs next Wednesday, Thursday and Friday. I hesitated at first but after some great chats with some other Cancer Mom's I decided that it was time to tell our story. Especially when I found out that all the equipment that was used to harvest Gracie's stems cells and do the transplant (putting them back) was all donor funded then I knew we had to add our small contribution where we could. I just hope I can get through it without the "ugly" cry. We will be on Thursday the 9th at 10 a.m. It airs on Q107 and Country 105.
I hope all is well with everyone.
Love the Sterks
The loss of Charlotte Amsing on January 17 brought me to my knees. I found myself checking the Amsings blog at all hours so of the day and night, only to be told by my friend Mel who also lost her son Grant. It seemed so ironic to hear it from her. My heart bleeds for Allison, Rob and Yolanda. I do know that Charlotte was a gift from Heaven. And if I knew at all what to say to this family it would be that she was blessed with parents like Allison and Rob and a big sister named Yolanda who gave her the best of themselves with every breath they took. There are alot of kids out there that don't get half that much. I hope they hold their heads high and know that they gave everything they could to Charlotte and she had a better 3 years than some kids ever will ever see. She will always remain in our hearts and memories, she was a bigger part of our journey than they will ever know. Hop Hops and butterflies.
Gracie continues to thrive, she is hilariously funny and sings so loud it could make you pull out the ear plugs if it wasn't so cute, so all is good . I have been invited to go back to work part time, and only for a few weeks until they find a replacement, but you know it feels good to know that people believe in you enough to say hey can you do this after two years away and drop a lap top in your house and say I feel confident in you. It does wonders for your psyche.
Life is crazy busy with all of the above and with the care of my Dad, who continues to decline in health. He is in a good spot now, put his health continues to decline at a little bit of an alarming rate, so with Angela and Roy's help we try to bring him as much dignity and quality of life that we can.
We have been asked to be part of the Radiothon for ACH. Which airs next Wednesday, Thursday and Friday. I hesitated at first but after some great chats with some other Cancer Mom's I decided that it was time to tell our story. Especially when I found out that all the equipment that was used to harvest Gracie's stems cells and do the transplant (putting them back) was all donor funded then I knew we had to add our small contribution where we could. I just hope I can get through it without the "ugly" cry. We will be on Thursday the 9th at 10 a.m. It airs on Q107 and Country 105.
I hope all is well with everyone.
Love the Sterks
Thursday, 12 January 2012
Mini Roller Coasters
All has been going so well, should have known it could not continue to be that perfect. After last week's blood work (we have this done every Wednesday in clinic) we were told that Gracie's liver enzymes were coming back "abnormally high". So we were asked to come back in on Monday to do further blood tests. Monday evening we were called by our Primary Nurse and advised that they were still high, although not as much, however in the manner that the news was delivered to us, it was quite alarming as "we would need to talk to Dr. Ron" was the response she had to all of my questions, this and the fact that she advised that they were thinking we would need to do another bone marrow aspiration (BMA). This put me into a tad bit of a tailspin for two days until clinic on Wednesday. We have a Primary Nurse who is new to the role, so I think this may have had something to do with all of this, however being told things like this in that manner is disturbing to say the least and although in hindsight I probably overreacted, I was scared.
Wednesday's clinic visit brought some relief as Dr. Ron believes that since all her other numbers are good it is probably due to the cold that she has. So we will wait another week and repeat the blood work before we even consider doing another BMA. He is concerned about the HLH returning especially since we finished the cyclosporin on December 31, but he still attributes this to her current cold.
That being done I had a great day planned for us today full of fun, however Gracie woke up this morning really upset and crying and wanted to go back to bed, once again alarms go off. I took her back to clinic and it turns out she has an ear infection. A little bit of a "phew" as this can also explain the higher liver enzyme levels. But being home with a child who has a normal "childhood" illness proves pretty tough, you would think they would rest all day, and that she did, with demands every five minutes, so I just laid in bed with her and we had a pyjama party so to speak.
Because we cannot give Tylenol (no masking fevers in oncology kids) we will take some needed quiet time this weekend as it will take a few days before she feels better.
That's the latest for now, hope all is as well as can be with everyone else.
Love The Sterks
Wednesday's clinic visit brought some relief as Dr. Ron believes that since all her other numbers are good it is probably due to the cold that she has. So we will wait another week and repeat the blood work before we even consider doing another BMA. He is concerned about the HLH returning especially since we finished the cyclosporin on December 31, but he still attributes this to her current cold.
That being done I had a great day planned for us today full of fun, however Gracie woke up this morning really upset and crying and wanted to go back to bed, once again alarms go off. I took her back to clinic and it turns out she has an ear infection. A little bit of a "phew" as this can also explain the higher liver enzyme levels. But being home with a child who has a normal "childhood" illness proves pretty tough, you would think they would rest all day, and that she did, with demands every five minutes, so I just laid in bed with her and we had a pyjama party so to speak.
Because we cannot give Tylenol (no masking fevers in oncology kids) we will take some needed quiet time this weekend as it will take a few days before she feels better.
That's the latest for now, hope all is as well as can be with everyone else.
Love The Sterks
Sunday, 8 January 2012
Scans delayed
As suspected, because of a runny nose and her history with pneumonia, no way...keep you posted....
Thursday, 5 January 2012
Good Bye 2011
2011 brought so much sadness that I am so glad to see it gone, but of course I also said that about 2010 so it will be interesting so say the least about what 2012 will bring, surely we have paid our dues and Gracie deserves to be a normal 3 year old?
Christmas and New Years brought us the most normal holiday times in two years. We had a birthday/Xmas celebration with my family on the 18th which was fabulous. We spent Christmas in Billings, Montana with Gary's family where Gracie was spoiled rotten. It was so good to be there surrounded by people who unconditionally love us, especially Gracie, you could feel the love everywhere, it was wonderful. We have not gotten alot of "family" time lately with Gracie being so compromised all the time it makes it difficult to get together with Ellie and family.
Gracie learned alot about "sharing" with her cousin Abby who happens to be almost the exact same age. There were times where Lisa (Abby's Mom) and I had to walk away as we were laughing so hard. She also got to hang out with her first true "baby" which is our new nephew, Arie was born on December 7. Her times with her older cousins, Kendal and Kayden were priceless, I think she thinks Kayden is there for her own personal entertainment. She did really really well, and other than sleeping until about 8 every morning she matched Abby step by step. The 9 hour truck ride seemed not to phase her at all, with the exception of a little bit of "travel lag" the Wednesday after we returned home.
So we have finished the cyclopsorin and are now officially off the magnesium as well, which leaves us only on the amlodopine (for blood pressure) and the fluconozal and septra (both to fight off possible infections as she is still considered immune suppressed). In clinic yesterday she had "abnormally" high liver enzymes, so we will be back in on Monday to see if we can figure out why. Everyone always tells you not to worry, but everything it seems we have done to her in the last two years seems to have possible liver side effects so this is always my first thought and the other being that elevated liver enzymes were a marker for her lymphoma and the HLH so this is a thought that lurks inside begging me to let it to the forefront. It takes every mental concentration I have to put this back where it belongs. She also has her six month post transplant PET scan on Friday, which should be fun as she cannot eat or drink and the scan is not until 1 p.m. Argh....I really loathe these days. Not to mention that she has a cough, which does not seem to concerning to Dr. Ron, but the Anaesthesiology team may have another view, so I will not be surprised if the procedure gets cancelled. As Anaesthesia is quite paranoid about her given the Pneumonia episode in October.
When I was in clinic yesterday I ran into a family who in the summer their son was in remission and they were preparing to go back to normal life. But not to be; at Christmas they were told his cancer had returned back to his lungs and shoulder. Looking at his Mom as her eyes welled up as she told me made my absolutely helpless heart sink. I really don't know what is worse your original diagnosis or the day your told it came back, as was our case last year. All I knew to do was to hug her, although this had to be done when he was not looking as he is a teenager and is all to aware of what is coming. This makes you really feel like you were punched in the stomach, not only do you feel for this family, but you cannot help but go to your own circumstance and feel scared all over again. Will it ever end?
Gracie's looks continue to change and we have been told by people who have not seen her in some time that they would not recognise her. Most of this is due to the cyclosporin and weaning off of it. She now has a thick mass of ash blond hair. The body hair is fading slowly but surely and the facial hair is down to a minimum now. I have put a few pictures for everyone.
All the best to everyone in 2012 and I hope that you choose "yes" to life. Say no to the things that bring you down and yes to all that brings you joy.
Christmas and New Years brought us the most normal holiday times in two years. We had a birthday/Xmas celebration with my family on the 18th which was fabulous. We spent Christmas in Billings, Montana with Gary's family where Gracie was spoiled rotten. It was so good to be there surrounded by people who unconditionally love us, especially Gracie, you could feel the love everywhere, it was wonderful. We have not gotten alot of "family" time lately with Gracie being so compromised all the time it makes it difficult to get together with Ellie and family.
Gracie learned alot about "sharing" with her cousin Abby who happens to be almost the exact same age. There were times where Lisa (Abby's Mom) and I had to walk away as we were laughing so hard. She also got to hang out with her first true "baby" which is our new nephew, Arie was born on December 7. Her times with her older cousins, Kendal and Kayden were priceless, I think she thinks Kayden is there for her own personal entertainment. She did really really well, and other than sleeping until about 8 every morning she matched Abby step by step. The 9 hour truck ride seemed not to phase her at all, with the exception of a little bit of "travel lag" the Wednesday after we returned home.
So we have finished the cyclopsorin and are now officially off the magnesium as well, which leaves us only on the amlodopine (for blood pressure) and the fluconozal and septra (both to fight off possible infections as she is still considered immune suppressed). In clinic yesterday she had "abnormally" high liver enzymes, so we will be back in on Monday to see if we can figure out why. Everyone always tells you not to worry, but everything it seems we have done to her in the last two years seems to have possible liver side effects so this is always my first thought and the other being that elevated liver enzymes were a marker for her lymphoma and the HLH so this is a thought that lurks inside begging me to let it to the forefront. It takes every mental concentration I have to put this back where it belongs. She also has her six month post transplant PET scan on Friday, which should be fun as she cannot eat or drink and the scan is not until 1 p.m. Argh....I really loathe these days. Not to mention that she has a cough, which does not seem to concerning to Dr. Ron, but the Anaesthesiology team may have another view, so I will not be surprised if the procedure gets cancelled. As Anaesthesia is quite paranoid about her given the Pneumonia episode in October.
When I was in clinic yesterday I ran into a family who in the summer their son was in remission and they were preparing to go back to normal life. But not to be; at Christmas they were told his cancer had returned back to his lungs and shoulder. Looking at his Mom as her eyes welled up as she told me made my absolutely helpless heart sink. I really don't know what is worse your original diagnosis or the day your told it came back, as was our case last year. All I knew to do was to hug her, although this had to be done when he was not looking as he is a teenager and is all to aware of what is coming. This makes you really feel like you were punched in the stomach, not only do you feel for this family, but you cannot help but go to your own circumstance and feel scared all over again. Will it ever end?
Gracie's looks continue to change and we have been told by people who have not seen her in some time that they would not recognise her. Most of this is due to the cyclosporin and weaning off of it. She now has a thick mass of ash blond hair. The body hair is fading slowly but surely and the facial hair is down to a minimum now. I have put a few pictures for everyone.
All the best to everyone in 2012 and I hope that you choose "yes" to life. Say no to the things that bring you down and yes to all that brings you joy.
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