Nothing major going on today; just watching Malibu smile and wiggle. She is eating good and sleeping good. She's doing great!
It appears like the next milestone will be getting the pathology report back. Once we get that, we will know what our immediate future will look like.
Until then, it's fun to just watch her sleep :)
-Ryan
Two months later she was diagnosed with Neuroblastoma cancer.
After being Stage 4, enduring 6 rounds of chemo, two major surgeries:
This little fighter was declared in remission on May 18, 2012!!
This is her story.
If you FOUND our balloon from our Wayland, MI Balloon Launch on Mallory's Birthday leave a comment or email us at sweetbabymallory@gmail.com
Saturday, December 3, 2011
Friday, December 2, 2011
Uplifting day
"Honestly we are coping, we are moving forward heads high and smiles on our face. This floor of the hospital is so promising, these children are amazing! So if you come visit us all we ask is for big smiles and laughs! " - I will repost this here because I totally 100% believe this.
I love my beautiful Mallory, we all do, but she needs us all to be in good spirits as well. I am so thankful for my hubstobe Ryan for being the "funny" guy, because this is a horrible nightmare and without him it would be so much worse. He has got me smiling, laughing, and totally keeping up with good vibes for our little girl. Mallory and Jillian have the worlds BEST dad.
He is an amazing man, we have been together for almost 6.5 years now. For those of you who don't know us very well we have our wedding planned for this Summer on July 7th (1 day shy of our 7 year anniversary!). We're really big procrastinators and this whole wedding planning just was looking pretty stressful and not much fun, although I am looking forward to being Mrs. Wiersma the whole idea of it really didn't sound apealing. So we totally compromised on the wedding and decided Sweet and Small was the way to go. I actually went dress shopping on Sunday with 2 of my bridesmaids and my little neice Emily and picked out the PERFECT dress for the day. I was going to call back on Wednesday and pay for it but obviously some things came up and that didn't happen. But I have it picked out at least. But back to Ryan and less about our wedding, he is my best friend, and he is my rock and he has been such an amazing part of my life. We have a beautiful house, 2 beautiful daughters, and we have a relationship that so many people envy. We have been through so much together but thats what makes us so strong as a couple. I love him with all of my heart and hope someday our daughters find a man to marry just as good as there Dad. I <3 You Fef! (I should warn everyone now I am notorious for giving everyone ridiclous nicknames!)
I forgot to mention Miss Malibu ROLLED OVER! Now she did it for the 1st time on Wednesday and we were both so EXCITED! But I totally figured out how that little stinker did it tonight, we missed it the first time, just came back to Mally on her tummy. She totally took her left arm, hooked it on the right side of the playmat (it has a little tiger with one of those links hanging off of it) and swings her left leg over her right one and bam she's on her stomach! I am totally counting it as rolling over because you've got to be pretty smart to figure out how to do it that way! So impressed by Mallory, 1 day after surgery and she's smiling and attempting to roll over.
Another fun thing about today was Nana, Papa, Uncle Eric and Jillian came up with Christmas Decorations! Mally's room is totally decked out for the holiday's, Christmas tree and all! And I promise to post pictures here soon (Yes I have been taking lots for all of you that were curious and follow my facebook. I am still a photoaholic. I just havent had the time yet to go through and resize them all). If you've ever been to Helen Devos you know that they have the COOLEST lobby, Jillian totally went CRAZY for the interactive video wall, she was jumping, running and squealing with how much fun that was! It was great to see her again today, she is a little rockstar as well!!!
We are meeting with 2 families this weekend that have gone through this same ordeal. So hopefully they will be able to give us some insite on what to expect more. Excited to meet some wonderful people that can give us some hope.
In all today was a "Good" day for all of us! Hopefully they will give us some more updates about the genetics of the tumor in the next few days so we will have a better understand of what exactly this Cancer is and a better understand of how to treat it.
We LOVE you all!!!!
I love my beautiful Mallory, we all do, but she needs us all to be in good spirits as well. I am so thankful for my hubstobe Ryan for being the "funny" guy, because this is a horrible nightmare and without him it would be so much worse. He has got me smiling, laughing, and totally keeping up with good vibes for our little girl. Mallory and Jillian have the worlds BEST dad.
He is an amazing man, we have been together for almost 6.5 years now. For those of you who don't know us very well we have our wedding planned for this Summer on July 7th (1 day shy of our 7 year anniversary!). We're really big procrastinators and this whole wedding planning just was looking pretty stressful and not much fun, although I am looking forward to being Mrs. Wiersma the whole idea of it really didn't sound apealing. So we totally compromised on the wedding and decided Sweet and Small was the way to go. I actually went dress shopping on Sunday with 2 of my bridesmaids and my little neice Emily and picked out the PERFECT dress for the day. I was going to call back on Wednesday and pay for it but obviously some things came up and that didn't happen. But I have it picked out at least. But back to Ryan and less about our wedding, he is my best friend, and he is my rock and he has been such an amazing part of my life. We have a beautiful house, 2 beautiful daughters, and we have a relationship that so many people envy. We have been through so much together but thats what makes us so strong as a couple. I love him with all of my heart and hope someday our daughters find a man to marry just as good as there Dad. I <3 You Fef! (I should warn everyone now I am notorious for giving everyone ridiclous nicknames!)
I forgot to mention Miss Malibu ROLLED OVER! Now she did it for the 1st time on Wednesday and we were both so EXCITED! But I totally figured out how that little stinker did it tonight, we missed it the first time, just came back to Mally on her tummy. She totally took her left arm, hooked it on the right side of the playmat (it has a little tiger with one of those links hanging off of it) and swings her left leg over her right one and bam she's on her stomach! I am totally counting it as rolling over because you've got to be pretty smart to figure out how to do it that way! So impressed by Mallory, 1 day after surgery and she's smiling and attempting to roll over.
Another fun thing about today was Nana, Papa, Uncle Eric and Jillian came up with Christmas Decorations! Mally's room is totally decked out for the holiday's, Christmas tree and all! And I promise to post pictures here soon (Yes I have been taking lots for all of you that were curious and follow my facebook. I am still a photoaholic. I just havent had the time yet to go through and resize them all). If you've ever been to Helen Devos you know that they have the COOLEST lobby, Jillian totally went CRAZY for the interactive video wall, she was jumping, running and squealing with how much fun that was! It was great to see her again today, she is a little rockstar as well!!!
We are meeting with 2 families this weekend that have gone through this same ordeal. So hopefully they will be able to give us some insite on what to expect more. Excited to meet some wonderful people that can give us some hope.
In all today was a "Good" day for all of us! Hopefully they will give us some more updates about the genetics of the tumor in the next few days so we will have a better understand of what exactly this Cancer is and a better understand of how to treat it.
We LOVE you all!!!!
Good Friday
Today was a good day.
Today was a good day, even though we have a child with cancer. " A good day" means something different than it did last week.
Last week a "bad day" was when work didn't go so well, or if I had to go grocery shopping (I hate grocery shopping), or something else just as mundane.
Good day now means we didn't receive any terrible news. Our daughter didn't need life altering surgery, and generally things didn't torpedo into a nightmare scenario.
Rather, we actually received good news today; Mallory's bone scan test came back clean! This is an awesome thing! It means that the cancer didn't spread to the bones. So, she has still has cancer, but it isn't in her bones too.
The doctors do two different tests involving the bones. They did a radioactive dye test to see if the cancer was in the solid portion of the bones. That test is done, and that's the one that was clean. We still have to wait for the bone marrow test. This will test the internal tissue of the bone for cancer.
She still has many more tests to undergo. The marrow test is one, and the MIBG scan is another big one. If any of these scans come back irregular, we have issues. If not, we have a clear roadmap to success.
So that's what we have so far. We have clean bones. We'll be thankful for that. We're thankful for that because it's the best news we've had since Tuesday.
That is the moral of the day; be thankful for what you have. Ashley said it best on Facebook: Please, all you parents, go give your kids an extra hug tonight. Because you never know when life is going to hit you with something heavy.
Today was a good day.
-Ryan
Today was a good day, even though we have a child with cancer. " A good day" means something different than it did last week.
Last week a "bad day" was when work didn't go so well, or if I had to go grocery shopping (I hate grocery shopping), or something else just as mundane.
Good day now means we didn't receive any terrible news. Our daughter didn't need life altering surgery, and generally things didn't torpedo into a nightmare scenario.
Rather, we actually received good news today; Mallory's bone scan test came back clean! This is an awesome thing! It means that the cancer didn't spread to the bones. So, she has still has cancer, but it isn't in her bones too.
The doctors do two different tests involving the bones. They did a radioactive dye test to see if the cancer was in the solid portion of the bones. That test is done, and that's the one that was clean. We still have to wait for the bone marrow test. This will test the internal tissue of the bone for cancer.
She still has many more tests to undergo. The marrow test is one, and the MIBG scan is another big one. If any of these scans come back irregular, we have issues. If not, we have a clear roadmap to success.
So that's what we have so far. We have clean bones. We'll be thankful for that. We're thankful for that because it's the best news we've had since Tuesday.
That is the moral of the day; be thankful for what you have. Ashley said it best on Facebook: Please, all you parents, go give your kids an extra hug tonight. Because you never know when life is going to hit you with something heavy.
Today was a good day.
-Ryan
More Good News!
So we received word that the Bone Scan is CANCER FREE!!!! This is just one more big thing we were super worried about, and we can check it off the list. PRAISE THE LORD!
Mallory is currently receiving a blood transfusion, her hemoglobin was pretty low this morning. But thankfully with the broviac it is making this SOOOO much easier, no more constant pokes for her. So she hasn't been too terribly fussy at all. She gets to eat finally also, she CHUGGED her first bottle. They will be giving her a diuretic to flush out some of the extra water weight from all of the fluids they've pumped her with. She weighed 11.7 lbs yesterday and she weighed 12.4 lbs today so she has gained a TON in fluid. So we're interested to see what her weight will be after all that fluid is gone and now that the tumor is out.
We are hoping to have more visitors up next week since there won't be much testing or invasive procedures until Thursday. (Ryan is possibly going back to work so I'll be here during the day by myself). I am thinking the times we will do will be from 10-12 and 6-8. We do have a friend that is going to set up a website since I know a lot of you have been asking if you can bring us food that will help set up a schedule so we are not trying to figure it out ourselves. She is going to set it up this weekend and I will post more information as soon as we get it all set up.
We cannot thank everyone enough for all your generous donations to us, we are meeting with a worker from the hospital today to try and figure out some stuff. But it has helped SOOOO much! We are on a tight budget with Ryan not working and with just our general bills. We hate to be in this situation and to rely on so many people for help but you guys are the reason we are staying so strong!
(And thanks Sarah Dewey-Wind for the most amazing Diet Coke and Donuts EVER! And to your wonderful family!!!)
ashley.
Mallory is currently receiving a blood transfusion, her hemoglobin was pretty low this morning. But thankfully with the broviac it is making this SOOOO much easier, no more constant pokes for her. So she hasn't been too terribly fussy at all. She gets to eat finally also, she CHUGGED her first bottle. They will be giving her a diuretic to flush out some of the extra water weight from all of the fluids they've pumped her with. She weighed 11.7 lbs yesterday and she weighed 12.4 lbs today so she has gained a TON in fluid. So we're interested to see what her weight will be after all that fluid is gone and now that the tumor is out.
We are hoping to have more visitors up next week since there won't be much testing or invasive procedures until Thursday. (Ryan is possibly going back to work so I'll be here during the day by myself). I am thinking the times we will do will be from 10-12 and 6-8. We do have a friend that is going to set up a website since I know a lot of you have been asking if you can bring us food that will help set up a schedule so we are not trying to figure it out ourselves. She is going to set it up this weekend and I will post more information as soon as we get it all set up.
We cannot thank everyone enough for all your generous donations to us, we are meeting with a worker from the hospital today to try and figure out some stuff. But it has helped SOOOO much! We are on a tight budget with Ryan not working and with just our general bills. We hate to be in this situation and to rely on so many people for help but you guys are the reason we are staying so strong!
(And thanks Sarah Dewey-Wind for the most amazing Diet Coke and Donuts EVER! And to your wonderful family!!!)
ashley.
Miss Malibu is a Rock Star!
Mallory did awesome last night, I couldn't bear to hear her whimper anymore so that sweet little girl has been snuggled up on my chest all night long. It's going to be hard getting used to working with all the things they have attached to her all the time, I am TERRIFIED I'm going to pull something out all the time. But the nurse assured us that we will get used to it and more comfortable as the days and weeks go by. The nurse kept asking also if I thought she was in pain, she whimpers a lot but how do you know and not know when your baby is in pain. They can't tell you whats going on, so I'm not sure if she is hungry or is hurting. But I have opted to give her medication as much as possible when she starts to wind up even a little bit. She hasn't eaten a drop in over 24 hours, her little tummy has got to be soooooo hungry! So we are waiting on the doctors to come in this morning and tell us when she can start eating and hopefully some other news.
They were not able to do the bone marrow biopsy, but that will be done next week along with the larger MIBG scan (again we will explain this soon as well). We should here about the bone scan sometime today though.
Ohhh and Ryan TOTALLY snores like crazy! I wish there was an easier way than digging my elbow into his chest to get him to knock it out. (I'm sure he will tell everyone he doesn't!)
ashley.
They were not able to do the bone marrow biopsy, but that will be done next week along with the larger MIBG scan (again we will explain this soon as well). We should here about the bone scan sometime today though.
Ohhh and Ryan TOTALLY snores like crazy! I wish there was an easier way than digging my elbow into his chest to get him to knock it out. (I'm sure he will tell everyone he doesn't!)
ashley.
Asleep
Mallory was having a hard time with the NPO orders (can't eat or drink). She finally fell asleep, begrudgingly. Hopefully we can begin to feed her again in the morning.
She appeared to have some level of pain, and she had a fairly consistent whimper in between the full-on screaming. It really wasn't as bad as it sounds, but Ashley and I learned that we need to start growing iron stomachs to be able to watch Mallory go through the hard times. We felt entirely helpless. I'm afraid there is more where that came from.
Both Ashley and Mallory are sound asleep. I suppose I should go join them. 'Night.
-Ryan
She appeared to have some level of pain, and she had a fairly consistent whimper in between the full-on screaming. It really wasn't as bad as it sounds, but Ashley and I learned that we need to start growing iron stomachs to be able to watch Mallory go through the hard times. We felt entirely helpless. I'm afraid there is more where that came from.
Both Ashley and Mallory are sound asleep. I suppose I should go join them. 'Night.
-Ryan
a little update
They were not able to do the bone marrow biopsy, but that will be done next week along with the larger MIBG scan (again we will explain this soon as well). We should here about the bone scan sometime tomorrow though.
They are keeping Mallory as comfortable as possible. She is quietly whimpering, they are keeping up on her pain meds. We were also shown for the first time how to clean and prepare the broviac tube, we will be responsible for taking care of this when we get home as well. So they are going to demonstrate and go over it with us a million times so we are pro's before we have to do it on our own.
ashley
They are keeping Mallory as comfortable as possible. She is quietly whimpering, they are keeping up on her pain meds. We were also shown for the first time how to clean and prepare the broviac tube, we will be responsible for taking care of this when we get home as well. So they are going to demonstrate and go over it with us a million times so we are pro's before we have to do it on our own.
ashley
Thursday, December 1, 2011
Step 1 complete.
Just talked to the surgeon; it went perfectly. No complications. This is the best possible outcome!
Tonight we rejoice, but tomorrow we continue onto the next stage.
Tonight we rejoice, but tomorrow we continue onto the next stage.
Clinical Trials
We were sitting around the hospital room earlier today, Mallory was being a champ. She slept most of the day, even though we were not able to feed her after 4 AM. She had her moments in the morning, but then she just slept all afternoon.
In the early afternoon, a gentleman walked in the room and introduced himself. He is Spectrum Health Research Technician. His came up to us to talk about entering Mallory into a clinical research program.
Helen DeVos Children's Hospital is part of Spectrum Health. Spectrum Health is part of the Clinical Oncology Group, which is a consortium of hospitals around the United States. St Jude's is a COG hospital, and so is Helen DeVos.
Clinical research starts just with a team of doctors with a common goal. They focus on exactly one thing, studying a specific disease. They then present their idea to an independent review board, and the board needs to approve the study before it can be opened up for participation.
The gentleman works for Spectrum Health, but he was representing the COG. He was asking for permission to enroll Mallory into a specific COG Neuroblastoma clinical research program. Essentially the doctors are going to remove the tumor, and then chop off a portion and allow the COG to study it for research purposes. A small sample of her blood, and bone marrow will also be going with the tumor sample.
We know that research doesn't happen overnight, and we know that sending out samples won't influence the kind of care that Mallory is going to receive, but we hope it will help the next person. We hope it will help mold and shape the kind of treatments that kids like Mallory receive in the future.
It wasn't long after he left, a very nice lady entered the room and introduced herself as a research doctor working for the Van Andel Institute. Her entire career has been spent studying neuroblastoma. She is literally one of the leading experts in the world on the specific disease that Mallory has, and she came up to our room to see our daughter. She is running her own clinical research at VAI on neuroblastoma.
We approved both studies. We felt it would be selfish and irresponsible not to.
In the early afternoon, a gentleman walked in the room and introduced himself. He is Spectrum Health Research Technician. His came up to us to talk about entering Mallory into a clinical research program.
Helen DeVos Children's Hospital is part of Spectrum Health. Spectrum Health is part of the Clinical Oncology Group, which is a consortium of hospitals around the United States. St Jude's is a COG hospital, and so is Helen DeVos.
Clinical research starts just with a team of doctors with a common goal. They focus on exactly one thing, studying a specific disease. They then present their idea to an independent review board, and the board needs to approve the study before it can be opened up for participation.
The gentleman works for Spectrum Health, but he was representing the COG. He was asking for permission to enroll Mallory into a specific COG Neuroblastoma clinical research program. Essentially the doctors are going to remove the tumor, and then chop off a portion and allow the COG to study it for research purposes. A small sample of her blood, and bone marrow will also be going with the tumor sample.
We know that research doesn't happen overnight, and we know that sending out samples won't influence the kind of care that Mallory is going to receive, but we hope it will help the next person. We hope it will help mold and shape the kind of treatments that kids like Mallory receive in the future.
It wasn't long after he left, a very nice lady entered the room and introduced herself as a research doctor working for the Van Andel Institute. Her entire career has been spent studying neuroblastoma. She is literally one of the leading experts in the world on the specific disease that Mallory has, and she came up to our room to see our daughter. She is running her own clinical research at VAI on neuroblastoma.
We approved both studies. We felt it would be selfish and irresponsible not to.
The next step.
They have finished the bone marrow biopsy, also the broviac is now in place and now we're onto the tough part the abdominal surgery. I am ready to hold and cuddle and kiss my beautiful baby girl. This day has been the worst of our lives. Waiting around is horrible, the unknown is horrible, feeling this helpless is horrible. She is in great hands and yet there is nothing that can help with the anxiety we are feeling. Our hearts are heavy, we are numb, we are praying like crazy for our baby girl!
Surgery Update 4:15 pm
"Malibu" has moved from the nuclear medicine to the operating room. They said the bone scan went on just like it is supposed to, and they are starting the hard part right now.
That's all we have for now!
Surgery Day (Ashley)
Mallory had her last bottle at 4:00am this morning, this little girl is a trooper, she spent majority of the morning and early afternoon curled up in my arms sleeping. She only made a peep when they had to do labs on her. She was even smiling and cooing at us in between falling in and out of sleep.
We met her surgeon this morning and I have to say this is an amazingly talented man. Dr. Robertson is going to be taking care of my baby and the lord has blessed him with the skills that our daughter requires in her extensive surgery. He decided to not operate on the right tumor and talked about how chemo treatment is going to be our best option to try and shrink the tumor and hopefully have it shrink away from the vena cava. If that doesn't work we will be exploring different options, he has dealt with children and adults with far worse tumors that intertwine in major arteries and blood vessels he just doesn't want to risk anything right now if the chemo treatment is successful.
They had a few different people come and talk to us about clinical trials. These involve any extra bits of tumor, blood and bone marrow that they take from her that will be put to use for further reaserch for Mallory and other patients with Neuroblastoma cancer. We opted to do this, everything they take from her will obviously be used to diagnose and treat Mallory first this is just the stuff that they have extra of. These are non invasive treatments, they will only take from things that she is already having done. We are thankful that they are continuing to do research and are finding other treatment options for children like ours. We are hoping that doing this will help the process with other families and other children going through the same thing.
We were very blessed to meet another woman going through a similar experience. Miss Lola, her daughter, is 5 years old and is fighting leukemia. Lindsey has reached out her hand through this horrible process and I have only chatted online with her a few times but she has given us hope, she gave us the biggest hug, and cried with us and we are so thankful to meet her. Even though our daughter is fighting for her life like her daughter is there are still no words we can say to them to make this process any better and vise versa. Its just wonderful to have someone to lean on, ask questions and can go to for comfort and support and knows what we are going through. God bless Miss Little Lola and we pray for her as well and for her family.
We met her surgeon this morning and I have to say this is an amazingly talented man. Dr. Robertson is going to be taking care of my baby and the lord has blessed him with the skills that our daughter requires in her extensive surgery. He decided to not operate on the right tumor and talked about how chemo treatment is going to be our best option to try and shrink the tumor and hopefully have it shrink away from the vena cava. If that doesn't work we will be exploring different options, he has dealt with children and adults with far worse tumors that intertwine in major arteries and blood vessels he just doesn't want to risk anything right now if the chemo treatment is successful.
They had a few different people come and talk to us about clinical trials. These involve any extra bits of tumor, blood and bone marrow that they take from her that will be put to use for further reaserch for Mallory and other patients with Neuroblastoma cancer. We opted to do this, everything they take from her will obviously be used to diagnose and treat Mallory first this is just the stuff that they have extra of. These are non invasive treatments, they will only take from things that she is already having done. We are thankful that they are continuing to do research and are finding other treatment options for children like ours. We are hoping that doing this will help the process with other families and other children going through the same thing.
We were very blessed to meet another woman going through a similar experience. Miss Lola, her daughter, is 5 years old and is fighting leukemia. Lindsey has reached out her hand through this horrible process and I have only chatted online with her a few times but she has given us hope, she gave us the biggest hug, and cried with us and we are so thankful to meet her. Even though our daughter is fighting for her life like her daughter is there are still no words we can say to them to make this process any better and vise versa. Its just wonderful to have someone to lean on, ask questions and can go to for comfort and support and knows what we are going through. God bless Miss Little Lola and we pray for her as well and for her family.
Surgery begins.
We just let the doctors take Mallory back. It was a powerful moment in the room; Mallory was being bombarded with prayers from thousands of people around the globe.
Even the Anesthesiologist got teary eyed- there was that much electricity in the room. "I'll be the doctor when we go back, but I'm a mom too!" It was amazing.
We appreciate all the love and support of everyone out there. It's between God and the doctors to keep her safe now.
We will update when we know anything more.
Thanks everyone!
-Ryan & Ash
Even the Anesthesiologist got teary eyed- there was that much electricity in the room. "I'll be the doctor when we go back, but I'm a mom too!" It was amazing.
We appreciate all the love and support of everyone out there. It's between God and the doctors to keep her safe now.
We will update when we know anything more.
Thanks everyone!
-Ryan & Ash
This blog
This blog is now available at www.SweetBabyMallory.com, as well as the original address.
We figured it was easier to remember, so we registered the domain.
We figured it was easier to remember, so we registered the domain.
Day 3, surgery day
Do you get grumpy when you haven't had a meal in a while? I know I do. Little Mallory has to go 8 hours without food or water! She isn't very happy this morning :(
Our little peanut, the fighter!
Today is going to be a tough day. Mallory started fighting for her life even before she was born and today she is up against a lot. She had to stop eating around 5:00 this morning and will not be able to eat anything until her surgery at 1. Ryan and I were thankfully able to get some sleep, It didn't come easy but after these past few days we are burnt out, our mind and bodies have taken a huge hit and thankfully we both got around 5 hours of sleep.
There is no way we imagined this is the road that we would be on. We love our baby girl with all of our heart. I can remember the day she was born and my heart just growing that much bigger. Those round cheeks, that sweet cry, and her little tuft of hair. We've had her home with us for almost 9 weeks and I wish I could take her place, that I could take her pain, that I could go through this and not her. We don't remember life without her, she is a part of our family, and she is stuck with us.
Dear Mallory,
We are not sure why or how you got this sick. We wish that they could trade places with you, no child should ever have to go through this. You are what is keeping this family together, you are the glue that is helping us stick. We love you with all of our hearts baby girl, we are so very blessed to have such a beautiful STRONG daughter in our lives. Your sister Jillian just adores you too, you are the only one that gets kisses from her, she has just gobbled you right up since we brought you home. This road is going to be a tough one little girl but you are a fighter. We need more time with you, we need to see those beautiful smiles, hear those most amazing giggles and see you grow into a little person. We will be with you through every step of this process. Little Girl you are up against a lot today but just remember you are a fighter! There are people around the world praying for you today Mallory, just know that each and everyone of them even if they haven't met you love you too and they are rooting for you baby!
Love Always and Forever
-Mommy
There is no way we imagined this is the road that we would be on. We love our baby girl with all of our heart. I can remember the day she was born and my heart just growing that much bigger. Those round cheeks, that sweet cry, and her little tuft of hair. We've had her home with us for almost 9 weeks and I wish I could take her place, that I could take her pain, that I could go through this and not her. We don't remember life without her, she is a part of our family, and she is stuck with us.
Dear Mallory,
We are not sure why or how you got this sick. We wish that they could trade places with you, no child should ever have to go through this. You are what is keeping this family together, you are the glue that is helping us stick. We love you with all of our hearts baby girl, we are so very blessed to have such a beautiful STRONG daughter in our lives. Your sister Jillian just adores you too, you are the only one that gets kisses from her, she has just gobbled you right up since we brought you home. This road is going to be a tough one little girl but you are a fighter. We need more time with you, we need to see those beautiful smiles, hear those most amazing giggles and see you grow into a little person. We will be with you through every step of this process. Little Girl you are up against a lot today but just remember you are a fighter! There are people around the world praying for you today Mallory, just know that each and everyone of them even if they haven't met you love you too and they are rooting for you baby!
Love Always and Forever
-Mommy
Cancer Sucks! (Ashley)
I just want to clarify for everyone that this experience is NOTHING like Grey's Anatomy. Although they are working there hardest to get things moving for our baby girl, it definitely is a MUCH slower process than what they show on TV.
We have been introduced to many amazing doctors, specialists, nurses and staff. We are very blessed to be working with these talented and brilliant people. They have made this journey as smooth as possible for us (not that it has been any where near smooth) and Miss Malibu!
We are learning things that a family should NEVER have to go through. We were introduced to Chester today, this is a chest where they demonstrate and show us what a broviac central line is. Because this is a direct connection to her blood supply when we take her home they will teach us how to take care of it. During the surgery they will be putting in the broviac, this is so that they can draw labs, administer chemo and any other medications she may need without having to poke her every time. We obviously have a LOT to learn about this still.
Today Mallory has been a champ she pretty much slept through both the echocardiogram and the ultrasound, she had her little eyes half open and a silly little grin on her face the whole time. I am thankful that this little girl can still smile, giggle and be just such a joy to our lives and she has no idea of how sick she really is. We are thankful that she will hopefully never remember any of this agonizing process. This girl smiles even when our eyes are swelled up with tears, when are hearts are breaking for her she is giggling and cooing at us.
Our Little (but very BIG) Jillypie came up to see us today. We needed her hugs, kisses and stubborn "no's" today. That little girl is also a CHAMP! She is in her own world and for that we are thankful. Her life revolves around quoting the abc's (not in any specific order, right now "e" is her favorite!), taking naps and nothing to do with cancer. We are thankful that even for a few moments she takes our mind off of it and reminds us that we have to distract ourselves and still enjoy things even with all the bad things surrounding us currently. I don't believe that Jillian has ANY idea of what is going on, we could try to explain this to her but she still deserves to be a kid. We would like to keep her life as normal as possible for the circumstance. I am forever grateful for my mother and erika grala for taking her for us right now so we can focus all of our energy on Mallory right now.
I would like to state that "cancer sucks". It sucks worse than anyone could ever imagine. People have reached out to us from continents away, there are people that have contacted us that have children going through treatment and they have sent us nothing but encouragement and positive thoughts. These people amaze me, they have not let this run there lives, their children may be sick but they are just like any other family this is just a road bump. These people have shown me that it is possible to return to a "normal" life, it may not be the normal that we were used to but its a normal that we will get used to eventually. And as much as this journey is going to suck, we are not going to allow it to tear us apart, we will pull through this.
We have been introduced to many amazing doctors, specialists, nurses and staff. We are very blessed to be working with these talented and brilliant people. They have made this journey as smooth as possible for us (not that it has been any where near smooth) and Miss Malibu!
We are learning things that a family should NEVER have to go through. We were introduced to Chester today, this is a chest where they demonstrate and show us what a broviac central line is. Because this is a direct connection to her blood supply when we take her home they will teach us how to take care of it. During the surgery they will be putting in the broviac, this is so that they can draw labs, administer chemo and any other medications she may need without having to poke her every time. We obviously have a LOT to learn about this still.
Today Mallory has been a champ she pretty much slept through both the echocardiogram and the ultrasound, she had her little eyes half open and a silly little grin on her face the whole time. I am thankful that this little girl can still smile, giggle and be just such a joy to our lives and she has no idea of how sick she really is. We are thankful that she will hopefully never remember any of this agonizing process. This girl smiles even when our eyes are swelled up with tears, when are hearts are breaking for her she is giggling and cooing at us.
Our Little (but very BIG) Jillypie came up to see us today. We needed her hugs, kisses and stubborn "no's" today. That little girl is also a CHAMP! She is in her own world and for that we are thankful. Her life revolves around quoting the abc's (not in any specific order, right now "e" is her favorite!), taking naps and nothing to do with cancer. We are thankful that even for a few moments she takes our mind off of it and reminds us that we have to distract ourselves and still enjoy things even with all the bad things surrounding us currently. I don't believe that Jillian has ANY idea of what is going on, we could try to explain this to her but she still deserves to be a kid. We would like to keep her life as normal as possible for the circumstance. I am forever grateful for my mother and erika grala for taking her for us right now so we can focus all of our energy on Mallory right now.
I would like to state that "cancer sucks". It sucks worse than anyone could ever imagine. People have reached out to us from continents away, there are people that have contacted us that have children going through treatment and they have sent us nothing but encouragement and positive thoughts. These people amaze me, they have not let this run there lives, their children may be sick but they are just like any other family this is just a road bump. These people have shown me that it is possible to return to a "normal" life, it may not be the normal that we were used to but its a normal that we will get used to eventually. And as much as this journey is going to suck, we are not going to allow it to tear us apart, we will pull through this.
Day 2 (Ryan)
Here we are at Day 2. I woke up this morning, rubbed my eyes, looked around, and we're still in the nightmare. I wasn't able to sleep it away. Normally when I wake up, nightmares end, and I go about my day care-free. This one is here to stay. Dammit.
We had an echocardiogram (ultrasound of the heart area) today, and then later yet another ultrasound.
Lots of doctor meetings today. Helen Devos Childrens Hospital is currently forming a massive surgical team to give Sweet Baby Mallory a radical surgery. It is amazing watching multiple surgical teams combine efforts to provide Mallory with the best care available.
The echocardiogram this morning gave us good news; there does not appear to be a third tumor on the inferior vena cava. The bad news is that the stuff they saw was actually the right-adrenal-gland tumor pressing into the IVC. This is bad because the right-side tumor is more intricate than we had thought yesterday. The echo showed that the tumor was only pressing into the IVC, rather than growing into it.
The pediatric surgeon decided to order a third ultrasound to study the interaction between the tumor and the IVC once more, so off Mallory went for another test.
She is being such a trooper through all of this. The Facebook response has been overwhelming. We really, really appreciate all of the kind words and support from everyone around the world. There are reports of literally thousands of people praying for our sweet sweet baby, and I thank you all for each one. Those prayers are giving Mallory the strength she needs to ride this ride.
The third ultrasound gave us a bit of a stunner- the right adrenal tumor is actually growing into the IVC. This means they are becoming one, and separation becomes much more difficult.
Tomorrow is where rubber meets the road, tomorrow is surgery day. They are planning on putting Mallory under around 1:00pm tomorrow. She will first go in and get her bone-scan done to look for cancer spots in her bones. She will then get wheeled into the operating room, where she will have bone marrow drawn from her hip bone. They will then install a central-line (broviac) for use with future medicine delivery (i.e. chemo). Once that is all done, they will start open surgery on her abdomen. The plan is to remove the entire left-side adrenal gland, tumor included. At this point they are not planning on removing the right side tumor, due to the complications with the IVC.
We met with a Endocrinologist today, too. With the removal of at least one of the adrenal glands, she will likely be on permanent hormone replacement drugs for the rest of her life.
I'm continually reading articles on the Internet regarding Neuroblastoma, and some articles on being the father of a child with cancer. There are lots of good resources out there, and I hope to make use of as many as possible.
I can read-up plenty, but sometimes the little things catch you off guard. The nurse just came in and talked with me about tomorrow's surgery, and what I need to know. She then pulled out a consent form for blood transfusions. The hospital is currently getting a stock in of blood that matches her blood type. They are specifically ordering blood that matches my daughter. A lot of blood, and they are ordering it the day before a massive surgery.
Dear God, please be with the surgeons tomorrow. Guide their hands and their minds to do the best work possible. Please let them have a productive surgery, and let Mallory come out of this stronger than ever. Oh, and please God, if it be thy will, please let the doctors leave all that extra blood on the shelf. They won't be needing it. Amen.
We had an echocardiogram (ultrasound of the heart area) today, and then later yet another ultrasound.
Lots of doctor meetings today. Helen Devos Childrens Hospital is currently forming a massive surgical team to give Sweet Baby Mallory a radical surgery. It is amazing watching multiple surgical teams combine efforts to provide Mallory with the best care available.
The echocardiogram this morning gave us good news; there does not appear to be a third tumor on the inferior vena cava. The bad news is that the stuff they saw was actually the right-adrenal-gland tumor pressing into the IVC. This is bad because the right-side tumor is more intricate than we had thought yesterday. The echo showed that the tumor was only pressing into the IVC, rather than growing into it.
The pediatric surgeon decided to order a third ultrasound to study the interaction between the tumor and the IVC once more, so off Mallory went for another test.
She is being such a trooper through all of this. The Facebook response has been overwhelming. We really, really appreciate all of the kind words and support from everyone around the world. There are reports of literally thousands of people praying for our sweet sweet baby, and I thank you all for each one. Those prayers are giving Mallory the strength she needs to ride this ride.
The third ultrasound gave us a bit of a stunner- the right adrenal tumor is actually growing into the IVC. This means they are becoming one, and separation becomes much more difficult.
Tomorrow is where rubber meets the road, tomorrow is surgery day. They are planning on putting Mallory under around 1:00pm tomorrow. She will first go in and get her bone-scan done to look for cancer spots in her bones. She will then get wheeled into the operating room, where she will have bone marrow drawn from her hip bone. They will then install a central-line (broviac) for use with future medicine delivery (i.e. chemo). Once that is all done, they will start open surgery on her abdomen. The plan is to remove the entire left-side adrenal gland, tumor included. At this point they are not planning on removing the right side tumor, due to the complications with the IVC.
We met with a Endocrinologist today, too. With the removal of at least one of the adrenal glands, she will likely be on permanent hormone replacement drugs for the rest of her life.
I'm continually reading articles on the Internet regarding Neuroblastoma, and some articles on being the father of a child with cancer. There are lots of good resources out there, and I hope to make use of as many as possible.
I can read-up plenty, but sometimes the little things catch you off guard. The nurse just came in and talked with me about tomorrow's surgery, and what I need to know. She then pulled out a consent form for blood transfusions. The hospital is currently getting a stock in of blood that matches her blood type. They are specifically ordering blood that matches my daughter. A lot of blood, and they are ordering it the day before a massive surgery.
Dear God, please be with the surgeons tomorrow. Guide their hands and their minds to do the best work possible. Please let them have a productive surgery, and let Mallory come out of this stronger than ever. Oh, and please God, if it be thy will, please let the doctors leave all that extra blood on the shelf. They won't be needing it. Amen.
Wednesday, November 30, 2011
Day 1 (As told by Ashley)
Here I sit in this stupid hospital room only 12 hours after we recieve the news that our beautiful 2 month old has neuroblastoma cancer. I feel like I can't breathe, I am numb and angry. Why Our Baby, Why? What did she do to deserve this? She is a BABY! Words cannot describe how much pain I feel inside. She is my baby, we planned her, I baked her, I gave birth to her, she is such a perfect round roly poly girl. And somehow life gave her cancer? Somehow through it all she still smiles, she even passed a few giggles today at us. I am trying to keep my faith that everything happens for a reasonm that god wouldnt give us more than we could handle but I can't help but feel so PISSED at God right now.
We have a few tests today that will give us a better indication of what we are dealing with. What our baby will be fighting.
I can't help but feel sorry for my oldest daughter as well, we are a cancer family now. Our lives will revolve around hospital stays, blood counts, tests, surgerys, and more things that I am sure we havent even prepared ourselves for yet. Jillian is almost 2, this is a time were we are supposed to be shaking our tushies to music, baking cookies, getting ready for christmas and her birthday and those things are put on hold for awhile.
I could barely get out of the house with the 2 of them on my own before this and now I have to juggle doctors apts, hospital stays, being a Mom of a busy toddler and a baby that is very sick. I am overwhelmed by this, and I know we have so much love and support and yet we feel so alone. We are going to have to learn to lean on everyone for help, and for me that is sooo hard. I am a stubborn stubborn woman. But both of our girls need me to be strong, to give them hope, to wipe there tears and kiss there boo boo's.
I have no idea what we're going to do. But we are a family and we are going to fight this together.
We have a few tests today that will give us a better indication of what we are dealing with. What our baby will be fighting.
I can't help but feel sorry for my oldest daughter as well, we are a cancer family now. Our lives will revolve around hospital stays, blood counts, tests, surgerys, and more things that I am sure we havent even prepared ourselves for yet. Jillian is almost 2, this is a time were we are supposed to be shaking our tushies to music, baking cookies, getting ready for christmas and her birthday and those things are put on hold for awhile.
I could barely get out of the house with the 2 of them on my own before this and now I have to juggle doctors apts, hospital stays, being a Mom of a busy toddler and a baby that is very sick. I am overwhelmed by this, and I know we have so much love and support and yet we feel so alone. We are going to have to learn to lean on everyone for help, and for me that is sooo hard. I am a stubborn stubborn woman. But both of our girls need me to be strong, to give them hope, to wipe there tears and kiss there boo boo's.
I have no idea what we're going to do. But we are a family and we are going to fight this together.
Day 1 (As told by Ryan)
Today started like any other day. Alarm clock, shower, and coffee. Except today we had to bring our 2-month old daughter to get an ultrasound performed.
I need to back up to yesterday. Ashley took Mallory to the pediatrician for her regularly scheduled two-month checkup. Mallory's pediatrician is an excellent doctor. Dr J. has some of the best bed-side manners amongst any doctor I've seen. He speaks to you exactly as you need to be spoken to. When he describes a procedure, or a test, he uses all the right words to give you all the information you need, without inundating you with all the what-ifs. Being the inquisitive one that I am, I like to ask my doctors more detailed questions. Dr J. has always been willing to bring the conversation to whatever level you ask him to, and I appreciate that about him.
Back to the appointment, Ashley took Mallory in for her normal two-month checkup. Dr J. checked her over, examined everything he needed to examine, felt around on her stomach to feel the internal organs, and everything else he has to do to perform his 107-point safety inspection. During this exam, Dr J. discovered something significant. I appreciate how he delivered the news to Ashley, which was to the effect of "She looks good! I'm going to put in a request for the ultrasound technicians to contact you and look at her abdomen. I just want to get a little better look at her internals, just to make sure she is alright."
We should have suspected something immediately. Truth be told, Ashley was more concerned about the doc's comment more than I was. I wasn't even at the appointment, but Ashley's description of the event didn't raise any alarm bells in my head. We should have suspected something when he told us to go to the hospital for the ultrasound. Why is this odd? Because Dr J's office has an ultrasound machine and a good tech running it. Uh oh.
Back to today, we bundle up Mallory into her car seat, and drive downtown. We didn't have to fuss with Jillian, since she was spending the night at Ashley's parents house.
We arrived at the hospital, and got immediately sat down in the ultrasound exam room. The technician was very polite and cordial, and began her scanning. Not three minutes into the scan, my Uh-Oh-Meter started to peak. The technician's mood changed, and Ashley and I suspected something was up. She was finished her scan, and went to review the pictures with the radiologist. She took some time before she came back into the room, and said she needed some more scans.
She was quite tense during the second screening, making nervous small talk with the baby trying to keep her calm. She focused in on a specific region, and took lots of measurements. I could see lots of scary looking stuff on the screen, but I still had no idea exactly what I was looking at.
She finished up, and excused herself once more. Easily an hour went by before she came back in.
"I have a phone call for you guys, it is your pediatrician, and he has to explain something to you."
Ashley took the phone while I held Mallory in a bundle.
9:00 AM; It was at this point that our nightmare was confirmed; "There are tumors on her adrenal glands."
The rest of the day was a complete whirlwind. We were admitted to the hospital, and we sat around and waited while a dozen or so doctors developed the game plan. She had a CT scan performed around 1:00 PM. In typical form with the rest of the Helen DeVos Children's Hospital, even the CT machine was plastered with cartoon paintings of fish to help calm the patients.
We waited around in our room until around 5:00 PM. Lots of pacing, lots of stressing, lots of praying. In walks our nurse, and she starts introducing a team of doctors as they enter the room. This is when we first met Dr. Kurt, who we soon learned is a St Jude's alum. She walked in carrying an instructional book under her arm. The title of the book was "Childhood Cancer."
I almost died right then. I wanted to die. I wanted to collapse and die right then, so that I wouldn't have to deal with what I was about to be told. The only reason I stood there to take the news was so Ashley had a cornerstone to rely on. I had to be the bulwark. I have to be the skeleton that keeps Mallory and Ashley and Jillian tied together as a supportive family.
The doctor has lots of experience delivering this news, and she rolled it out at the exactly correct tempo. I was impressed how I could be told my kid has cancer, and still didn't feel like I just got steamrolled. She is a consumate professional.
Neuroblastoma is a rare cancer of the sympathetic nervous system, which typically manifests as tumors on the adrenal glands. Don't feel bad if you've never heard of this cancer, because neither did I until it came out of the doctor's mouth.
The road ahead of us is long. I stayed up late all night researching and learning. There are lots of scary things out there, but I wanted to know it all. All the good stuff, all the bad stuff. Emotions are racing, but knowledge is power. If we can prepare for what is coming, and make any useful contribution to the process, I'll invest all I have into it.
We spent most of the night crying and praying. Tomorrow we'll be strong, but tonight we allowed ourselves to be weak.
I need to back up to yesterday. Ashley took Mallory to the pediatrician for her regularly scheduled two-month checkup. Mallory's pediatrician is an excellent doctor. Dr J. has some of the best bed-side manners amongst any doctor I've seen. He speaks to you exactly as you need to be spoken to. When he describes a procedure, or a test, he uses all the right words to give you all the information you need, without inundating you with all the what-ifs. Being the inquisitive one that I am, I like to ask my doctors more detailed questions. Dr J. has always been willing to bring the conversation to whatever level you ask him to, and I appreciate that about him.
Back to the appointment, Ashley took Mallory in for her normal two-month checkup. Dr J. checked her over, examined everything he needed to examine, felt around on her stomach to feel the internal organs, and everything else he has to do to perform his 107-point safety inspection. During this exam, Dr J. discovered something significant. I appreciate how he delivered the news to Ashley, which was to the effect of "She looks good! I'm going to put in a request for the ultrasound technicians to contact you and look at her abdomen. I just want to get a little better look at her internals, just to make sure she is alright."
We should have suspected something immediately. Truth be told, Ashley was more concerned about the doc's comment more than I was. I wasn't even at the appointment, but Ashley's description of the event didn't raise any alarm bells in my head. We should have suspected something when he told us to go to the hospital for the ultrasound. Why is this odd? Because Dr J's office has an ultrasound machine and a good tech running it. Uh oh.
Back to today, we bundle up Mallory into her car seat, and drive downtown. We didn't have to fuss with Jillian, since she was spending the night at Ashley's parents house.
We arrived at the hospital, and got immediately sat down in the ultrasound exam room. The technician was very polite and cordial, and began her scanning. Not three minutes into the scan, my Uh-Oh-Meter started to peak. The technician's mood changed, and Ashley and I suspected something was up. She was finished her scan, and went to review the pictures with the radiologist. She took some time before she came back into the room, and said she needed some more scans.
She was quite tense during the second screening, making nervous small talk with the baby trying to keep her calm. She focused in on a specific region, and took lots of measurements. I could see lots of scary looking stuff on the screen, but I still had no idea exactly what I was looking at.
She finished up, and excused herself once more. Easily an hour went by before she came back in.
"I have a phone call for you guys, it is your pediatrician, and he has to explain something to you."
Ashley took the phone while I held Mallory in a bundle.
9:00 AM; It was at this point that our nightmare was confirmed; "There are tumors on her adrenal glands."
The rest of the day was a complete whirlwind. We were admitted to the hospital, and we sat around and waited while a dozen or so doctors developed the game plan. She had a CT scan performed around 1:00 PM. In typical form with the rest of the Helen DeVos Children's Hospital, even the CT machine was plastered with cartoon paintings of fish to help calm the patients.
We waited around in our room until around 5:00 PM. Lots of pacing, lots of stressing, lots of praying. In walks our nurse, and she starts introducing a team of doctors as they enter the room. This is when we first met Dr. Kurt, who we soon learned is a St Jude's alum. She walked in carrying an instructional book under her arm. The title of the book was "Childhood Cancer."
I almost died right then. I wanted to die. I wanted to collapse and die right then, so that I wouldn't have to deal with what I was about to be told. The only reason I stood there to take the news was so Ashley had a cornerstone to rely on. I had to be the bulwark. I have to be the skeleton that keeps Mallory and Ashley and Jillian tied together as a supportive family.
The doctor has lots of experience delivering this news, and she rolled it out at the exactly correct tempo. I was impressed how I could be told my kid has cancer, and still didn't feel like I just got steamrolled. She is a consumate professional.
Neuroblastoma is a rare cancer of the sympathetic nervous system, which typically manifests as tumors on the adrenal glands. Don't feel bad if you've never heard of this cancer, because neither did I until it came out of the doctor's mouth.
The road ahead of us is long. I stayed up late all night researching and learning. There are lots of scary things out there, but I wanted to know it all. All the good stuff, all the bad stuff. Emotions are racing, but knowledge is power. If we can prepare for what is coming, and make any useful contribution to the process, I'll invest all I have into it.
We spent most of the night crying and praying. Tomorrow we'll be strong, but tonight we allowed ourselves to be weak.
Saturday, January 1, 2011
Summary of events (TL;DR version)
Ryan and Ashley's baby girl Mallory was two months old when she was diagnosed with Neuroblastoma cancer.
Timeline:
Monday November 28, 2011
Mallory's Pediatrician feels lumps during regular two-month checkup; orders ultrasound.
Tuesday November 29, 2011
Ultrasound reveals two, maybe three tumors. Oncologist called in, orders CT scan.
Oncologist informs us that Mallory has Neuroblastoma cancer.
Wednesday November 30, 2011
Echocardiogram of the heart to examine IVC. Surgeon doesn't get enough info, orders another ultrasound. Surgery plans are setup for Thursday
Thursday December 1, 2011
Goes under general anesthesia, has radioactive bone scan performed, has broviac central line installed, has left side adrenal gland and tumor removed. Did not require NICU; spent night in her own room.
Friday December 2, 2011
1st blood transfusion.
Results of bone scan came back normal; no spread into the bones.
Saturday December 3, 2011
Relaxing in room, recovering from surgery. No other news today.
Sunday December 4, 2011
No new news. Just relaxing and recovering. Anxious for test pathology report tomorrow.
Monday December 5, 2011
No path report yet. Patiently waiting.
Wednesday December 7, 2011
Got to go home! Meeting to discuss test results pushed back to next week (they are planning on Friday).
Started SSKI (Iodine) drops in preparation for MIBG scan
Thursday December 8, 2011
Received MIBG injection
Friday December 9, 2011
Propofol sedation, bilateral bone marrow draw (aspirate). MIBG scan performed.
Friday December 16, 2011
Met with doctors; official diagnosis: Stage 2B Neuroblastoma, intermediate risk. Planning 4 four rounds of chemo to neutralize right side tumor, no plans for surgery at this time.
Wednesday December 21, 2011
Weight 5.8kg Height 63cm
Admitted to hospital. Began round one of Chemotherapy. Received 100mg Carboplatine, 23mg Etoposide. 1mg Zophran every 6 hours. 5mg benadryl.
Thursday December 22, 2011
Round 1, Day two. 23mg Etoposide.
Friday December 23, 2011
Round 1, Day three. 23mg Etoposide.
80ml blood transfusion.
Discharged from hospital.
Thursday January 12, 2012
Dye study performed on double-lumen broviac, fibrin sheath formation,
Chemo Round 2, Received 110mg Carboplatin, 200mg Cytoxan, Mesna 50mg, Doxorubicin 6mg, Mesna 50mg (again), 2mg Zofran, 3mg Benadryl, 2mg Decadon
Friday January 13, 2012
Discharged.
Monday January 30, 2012
CT and catecholamine test peformed to analyze progress. RH adrenal tumor is growing, activity showing up on liver now too. Catecholamine is down.
Scheduled for surgery to biopsy RH tumor and replace broviac.
Thursday February 2, 2012
Admitted for surgery. Dr Robertson performed biopsy on RH adrenal tumor, removed existing broviac and inserted a new one.
Dr Robertson noted "a lot" of spots on the liver.
Morphine throughout the night.
Friday February 3, 2012
Inpatient, recovering from surgery. Multiple* does of morphine for pain.
Saturday February 4, 2012
Inpatient, doing better. Off the morphine, just Tylenol now.
Sunday February 5, 2012
Inpatient, hemoglobin was 8.2, so they did a reticulocyte count. Gave her a transfusion.
Discharged in time to see second-half of Superbowl (Giants beat the Patriots!)
Friday February 10, 2012
Met with Oncologist; Mallory is now officially a Stage 4 cancer patient.
Admitted for new, stronger Chemo (Chemo 2.0!)
Chemo Round 1, Day 1. Topotecan and Cytoxan.
(Reset chemo cycle count due to new protocol)
Saturday February 11, 2012
Chemo Round 1, Day 2, Topotecan and Cytoxan.
Sunday February 12, 2012
Chemo Round 1, Day 3
Monday February 13, 2012
Chemo Round 1, Day 4
Tuesday February 14, 2012
Chemo Round 1, Day 5
Wednesday February 15, 2012
Discharged
Sunday February 19, 2012
Went to ER due to Mallory running a fever and being lethargic and not eating. Got admitted.
Multiple antibiotics administered.
Blood transfusion.
...waaaaay behind on updates on this page, sorry!
Friday, May 18, 2012
Declared NED (No Evidence of Disease, aka in remission)!
Timeline:
Monday November 28, 2011
Mallory's Pediatrician feels lumps during regular two-month checkup; orders ultrasound.
Tuesday November 29, 2011
Ultrasound reveals two, maybe three tumors. Oncologist called in, orders CT scan.
Oncologist informs us that Mallory has Neuroblastoma cancer.
Wednesday November 30, 2011
Echocardiogram of the heart to examine IVC. Surgeon doesn't get enough info, orders another ultrasound. Surgery plans are setup for Thursday
Thursday December 1, 2011
Goes under general anesthesia, has radioactive bone scan performed, has broviac central line installed, has left side adrenal gland and tumor removed. Did not require NICU; spent night in her own room.
Friday December 2, 2011
1st blood transfusion.
Results of bone scan came back normal; no spread into the bones.
Saturday December 3, 2011
Relaxing in room, recovering from surgery. No other news today.
Sunday December 4, 2011
No new news. Just relaxing and recovering. Anxious for test pathology report tomorrow.
Monday December 5, 2011
No path report yet. Patiently waiting.
Wednesday December 7, 2011
Got to go home! Meeting to discuss test results pushed back to next week (they are planning on Friday).
Started SSKI (Iodine) drops in preparation for MIBG scan
Thursday December 8, 2011
Received MIBG injection
Friday December 9, 2011
Propofol sedation, bilateral bone marrow draw (aspirate). MIBG scan performed.
Friday December 16, 2011
Met with doctors; official diagnosis: Stage 2B Neuroblastoma, intermediate risk. Planning 4 four rounds of chemo to neutralize right side tumor, no plans for surgery at this time.
Wednesday December 21, 2011
Weight 5.8kg Height 63cm
Admitted to hospital. Began round one of Chemotherapy. Received 100mg Carboplatine, 23mg Etoposide. 1mg Zophran every 6 hours. 5mg benadryl.
Thursday December 22, 2011
Round 1, Day two. 23mg Etoposide.
Friday December 23, 2011
Round 1, Day three. 23mg Etoposide.
80ml blood transfusion.
Discharged from hospital.
Thursday January 12, 2012
Dye study performed on double-lumen broviac, fibrin sheath formation,
Chemo Round 2, Received 110mg Carboplatin, 200mg Cytoxan, Mesna 50mg, Doxorubicin 6mg, Mesna 50mg (again), 2mg Zofran, 3mg Benadryl, 2mg Decadon
Friday January 13, 2012
Discharged.
Monday January 30, 2012
CT and catecholamine test peformed to analyze progress. RH adrenal tumor is growing, activity showing up on liver now too. Catecholamine is down.
Scheduled for surgery to biopsy RH tumor and replace broviac.
Thursday February 2, 2012
Admitted for surgery. Dr Robertson performed biopsy on RH adrenal tumor, removed existing broviac and inserted a new one.
Dr Robertson noted "a lot" of spots on the liver.
Morphine throughout the night.
Friday February 3, 2012
Inpatient, recovering from surgery. Multiple* does of morphine for pain.
Saturday February 4, 2012
Inpatient, doing better. Off the morphine, just Tylenol now.
Sunday February 5, 2012
Inpatient, hemoglobin was 8.2, so they did a reticulocyte count. Gave her a transfusion.
Discharged in time to see second-half of Superbowl (Giants beat the Patriots!)
Friday February 10, 2012
Met with Oncologist; Mallory is now officially a Stage 4 cancer patient.
Admitted for new, stronger Chemo (Chemo 2.0!)
Chemo Round 1, Day 1. Topotecan and Cytoxan.
(Reset chemo cycle count due to new protocol)
Saturday February 11, 2012
Chemo Round 1, Day 2, Topotecan and Cytoxan.
Sunday February 12, 2012
Chemo Round 1, Day 3
Monday February 13, 2012
Chemo Round 1, Day 4
Tuesday February 14, 2012
Chemo Round 1, Day 5
Wednesday February 15, 2012
Discharged
Sunday February 19, 2012
Went to ER due to Mallory running a fever and being lethargic and not eating. Got admitted.
Multiple antibiotics administered.
Blood transfusion.
...waaaaay behind on updates on this page, sorry!
Friday, May 18, 2012
Declared NED (No Evidence of Disease, aka in remission)!
Donations
UPDATE:
We are currently not requesting any donations of any kind.
If you feel so inclined, please send donations to Helen DeVos Childrens Hospital. They need all the help they can get.
We have received numerous requests for a way to donate, and we weren't sure how to react. We have received so much love and support already, and we appreciate all of it.
From the bottom of our hearts, we thank you all.
-Ryan & Ash (and Jillian and Mallory)
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