Alexander Stoffelsma's Fight
for a Cure to AML
Alex in the Middle March 2016
On behalf of Alexander Stoffelsma and his family,
This page is dedicated to fundraising for Acute Myeloid Leukemia (AML) research and supportive care for Oncology Patients at BC Children’s Hospital. The money raised will benefit research into a rare form of cancer in kids (less than 1 in 100,000 children are diagnosed with AML each year) in hopes we can help improve the outcome for kids with this disease.
The prognosis for pediatric AML has improved over the decades, but there is still much progress to be made. Recent research now enables improved risk stratification of childhood AML at diagnosis. Based on a variety of different factors, new AML patients are categorized into standard, high or very high risk groups, so that treatment can be modified based on risk of relapse. Improvements in supportive care have also played a large role in helping to improve outcomes for these patients. Children's Oncology Group (COG) in 2013 published the current overall (All risk groups) disease free survival for this disease in children to be between 60 and 70 %.
We would like to turn our diagnosis into a positive, and do our part to help make sure that research into this cancer is supported. Our goal is to improve the outcome with kids with AML and other pediatric cancers as well. We say this as research into Pediatric AML Leukemia will also benefit other types of pediatric cancers due to the significant overlap in treatment methods and care.
Alexander is 4 years old, he loves soccer, swimming and riding bikes but most of all playing with his two brothers aged 6 and 2. Up until the end of April 2016, he was a completely healthy thriving little boy. Within a week, he went from the soccer field to being air-lifted to the Intensive Care Unit at BC Children’s Hospital on April 23rd where he spent two weeks fighting for his life. From there, he was moved to the Oncology Ward where we have been and will be for the next 4-6 months undergoing treatment. Between each round of Chemotherapy, he will hopefully get a few days at home to be a family again.
December 23, 2016: Christmas is nearly here, and Alexander and his brothers Evan and Jens are excited. Kim and I are overjoyed to say that we have had no setbacks since our return home in early October. Alexander remains in remission and we are thankful for each and every minute we get as a family under one roof once again. The stress and anxiety of the hospital life is abating and everyone seems to be settling into our regular home life again. Unfortunately, as parents we have the ongoing concern of relapse, triggered by things as little as Alex complaining about a sore leg or stomach, or noticing a new blemish in his skin. It’s the life we will live for the foreseeable future, and we are thankful of every second.
Thank you to all of you whom have supported Alexander and our family through giving to his Wall of Tribute Page. As of today we have raised nearly 42,000 $, we are humbled and so appreciative of all of the support and donations, understanding that this is just one of many important causes that needs support.
As for the future, more research into Acute Myeloid Leukemia is needed, being a rarer pediatric cancer with a better remission rate than some other more common cancers makes it a poor candidate for devoted research, so Kim and I are committing personally to this cause in hopes we will be able to make a meaningful contribution to improving the prognosis of this disease. Should any of you whom have supported us want to keep in touch and join us in this regard, please feel free to email me at firstname.lastname@example.org .
I hope this is the last update I write to be posted to this website. The holidays are a perfect time to remember that as unlucky as we have been in the past year, we have also been blessed. Our hearts go out to those who lost their loved ones, and we can’t help but imagine what you must be going through. And to those angels whom are past the suffering that we were lucky to meet at BCCH and Ronald McDonald House, your memory inspires us to be better and do better.
Thank you and bless you– The Stoffelsma’s
October 16th, 2016: We have been home now for a little over two weeks and it really feels like it has already been much longer. I think surreal is the best word to explain our feeling, to be home as a family again for longer than a few days, and starting to find a “normal” routine, yet still with the lingering feeling that we are not out of the woods. Alex is scheduled for a Bone Marrow Biopsy and Bloodwork back at BCCH this upcoming Tuesday. If all tests come back as we hope, Alex will have his permanent line removed on November 1st. In the meantime, Alex is getting a little stronger every day and is really enjoying playing with his brothers at home. Last weekend he even did a kids cyclecross race along with his brothers on his push bike and had a great time.
October 2nd, 2016: Alexander finally made it home after round 4 on Friday after 32 days at BCCH. This round was definitely the toughest besides the first round for Alex. Alex was febrile for 11 days after getting a strep infection on day 14 and subsequently a virus called enterovirus that can put healthy kids in the ICU. As a result, he needed a lot of support through a rough time. He did not eat for over a week and required IV nutrition as well as another trip to the ICU, fortunately only for a few days. Alex as usual surprised some of the doctors with his rapid improvement once he started to turn to the good. And after only a week from being moved out of the ICU, we were on our way home. With all the good news of nearly being done his treatment, we have learned that unfortunately Alex has sustained some damage to his heart. Not life threatening damage, but damage just the same. The potential causes are the chemotherapy treatment itself, the bacterial infection and/or the viral infection. We will likely never know the cause, however it really doesn’t matter anyway. Cardiology has told us that many people live normal lives with the level of function Alex still has in his heart so we are hopeful it will not cause him any long term health issues even if it does not recover. Of course we hope we will get some more luck and his heart will recover to some degree in the weeks and months ahead.
We are excited to be home, also scared about the prospect of relapse, and sad to leave some really special people fighting their own battles as hard or harder than ours. We will be sending our thoughts and prayers to those we know and those we don’t still fighting and still hoping to achieve a remission. Thank you for the support to BCCH, we have been assured our fundraising will be benefiting research to help find a cure and with your help we have raised over 40,000 $ over 5 months of treatment!
September 4, 2016: After a nice stay at home waiting for Alex to recover enough for round 4, we were readmitted on Tuesday the 29th of August back here at BCCH for what we are hopeful will be Alexander’s final round of chemotherapy. Today is probably Alex last day of freedom before protective isolation, but the good news is we hope we will be home early in October. Alex has been well enough to get out of the hospital to have some fun between chemo treatments so far including a few trips to the maritime museum nearby and lots of time building lego and running around the Ronald McDonald House with his brothers. Kim’s brother Jon has been with us the past week supporting us with Jens, Alexander and Evan allowing me to get a little work done and Kim and I to have a few moments to catch up and plan the days ahead. We are so fortunate to have such amazing family support through this and have to say are feeling pretty lucky to be (hopefully) nearing the end of our stay here. The journey for us is by no means over just yet, nor will it be when we get home, but as we get to know more and more parents that also have children here in hospital that our stint here is actually a fairly short one in comparison to others, and the look of our outcome thus far is something that many of these families could only dream of. There is a constant reminder as there are a handful of families here we have met with children having a relapse, that we may be revisiting this down the road. And while we may come home and return to normal routines, we are still going to be thinking of all the families and friends here who are continuing to fight.
Alex fundraising page has now raised nearly 38,000 $ for Pediatric Oncology Research and will help families like ours and others in the future. Thank you for that support and all the positive and good thoughts being sent to our son Alexander.
August 21st, 2016: We made it home yesterday!! Alex blood counts made it as of yesterday morning to our surprise on day 30 for this round or 5 days sooner than last round. We have bloodwork scheduled for Tuesday here in Victoria and shall see when he is recovered enough to start round 4 and that could be as early as next Thursday.
Round 3 was not without its challenges as Alex did have a blood infection once again that resulted in a week long fever, many tests, different antibiotics, and being “hooked up” for a long period of time. Considering it all, and perhaps unsurprisingly Alex took it all in stride and we were fortunate to stay in our little room without any emergency trips. We have to thank Oma and Opa as well as Auntie Sarah, Uncle Neil, Mia and Isabelle for spending the past month in Vancouver supporting us all as well as Jeff, Pam and Syd for giving our crazy family an amazing place to stay so close to the hospital.
In the meantime, we are super happy to be a family under one roof again at least for a few days to recharge for what we hope will be Alex last round of chemotherapy. We are all starting to think about “real” life once we are home hopefully for good by the end of September, but to be honest it also seems a bit surreal. It will be 5 years from our last day of treatment that we will really be able sleep soundly without worrying about relapse, but according to Alex’s Dr the way that Alex’s cancer has responded to treatment especially round 1 when he was so sick, and the fact that his white blood cell recovery has been taking longer than average to recover in the subsequent rounds gives us good reason to be positive his cancer is sensitive to the drugs he has been given.
Thank you again for all your support! We are now at nearly 25,000 $ raised for BCCH Oncology!
August 11th, 2016: Today is day 21 of round 3. Alex has been in protective isolation (in same room) here at BCCH for the past two weeks and will probably be so at least for another two weeks. He currently is doing OK but has an ongoing fever that he has been battling the past 4 days. The Dr’s had warned us it was “when” he would come down with something, and not “If”, but that doesn’t really make it any easier. We are all keeping a very close eye on him and his spirits are still good between fever’s. He is being showered with attention and love from his family and his willingness to continually take medicine, be examined, poked and prodded is amazing. Thanks again for all the thoughts, love and prayers being sent his way.
Alex has now raised nearly 22,000 dollars for Children’s Oncology Research through the BC Children’s Hospital Foundation and this website! Amazing outpouring of support from over 60 friends and family to a great cause.
July 23, 2016: July 23, 2016: We were happy to get the news on Thursday that we would be starting up treatment again with Alex due to his neutrophil’s having recovered sufficiently. When Kim told Alex and his big brother Evan they both excitedly exclaimed “Yeah! We get to play Mario Cart again!”. Kim told them not to get their hopes up, in case it was not possible to get one of the game players in our room. What Alex said in response is what I wanted to share as it shows just how much he hears in our talk at his bedside and, more than I thought, thinks about what is going on… “Mommy, that's OK, I’m doing so well at my Cancer, I get to start level 3.”
Today was the second day of his treatment and he is doing well so far. He had his spinal chemotherapy yesterday and will receive three additional doses of two types of IV chemo each day for 5 days. This round is called an Intensification round due to its shorter duration but higher dose of the drugs. As it is different than the first two rounds we do not know exactly how it will go other than it will still knock his immune system down to near nothing and keep us in the hospital for at least the next 30 days. It’s all part of the path we must take, but along the way we are trying to enjoy the moments we have as a family. Today we were given a pass (time out of the hospital) in the morning between Chemo treatments that let us have some family time biking and we could go out for lunch. Alex loved it and so did the rest of us.
Thank you again for all for your ongoing support, with your help we have raised just shy of 20,000$ so far. We will be having a meeting this week to discuss with the head of Childhood Cancer and Blood Research Group at BCCH where we can designate these funds to be most useful in fighting AML and other childhood cancers.
July 20, 2016: Alex is doing well and enjoying some time at home since discharge late last week. We are currently just waiting for Alex blood counts to indicate he is ready to start the next round of treatment and trying to take advantage of these “bonus” days instead of stressing about the fact they these days are adding to the overall treatment schedule. Tomorrow Alex will have his blood checked at the Oncology Clinic in Victoria to confirm his re-admission for Friday back in Vancouver bringing us to day 43 for round 2. In his extra time home Alex has been using it playing with brothers, cousins and old friends and is getting stronger each day. Our hope is it is only making him even more resilient for the second half of our battle. He is a strong kid, and I always joked before this he would be the enforcer/protector of his brothers when he was older. Watching how he is handling everything both mentally and physically I will stick to that prediction! Over the next few days I will attach some more pictures of Alex over the past few weeks. Thank you again for your thoughts, prayers and support.
July 13, 2016: Alex is doing well overall with a good appetite and lots of energy. We are still in protective isolation at BCCH on day 35 of this round of his treatment, however we are really hoping that very soon we will be able to get home for a few days before getting back at it next week once again. We have not had any further scares this round and he is spending more and more time “unhooked” as we call it (not hooked up to IV). We have been super fortunate to have tons of family support at the hospital and Alex told me today that he is never board due to his cousins/uncles/aunts/oma’s and opa’s and brother’s visiting, playing and reading with him. This process is truly a marathon and we are so thankful for all of the support we are receiving by everyone in and around our lives. We truly hope to pay it forward in our future.
July 1st, 2016: Canada Day and happy to say Alexander is in good spirits despite being in protective isolation for nearly two weeks. We have started to see signs that his bone marrow is recovering in this round of treatment and he has recovered very well from a bacterial blood infection he was hit with about a week ago. We were fortunate to catch it quickly and that the first antibiotics chosen before the Doctor’s knew what the bacteria was were very effective. We had always been told it was very likely this would happen (that is why AML kids stay in the hospital through care) but that didn’t make it any less worrisome when it did. The team around us was amazing and when he spiked his fever it was probably less than 30 minutes before he had all the blood samples drawn and the IV antibiotics flowing. This likely prevented a return to the ICU that our Doctor had warned us to be prepared for.
Overall we are a little past half way through round two. Kim is doing amazing keeping an Eagle eye on Alex and ensuring we all stay in the moment and appreciate how well Alexander is doing. Jens, Evan and myself are looking forward to spending more time in Vancouver as a family through the rest of this journey now that school is out.
Thank you for your ongoing support!
June 13, 2016: Alexander is doing well and is undergoing his second round of Chemo at BCCH. We are in good spirits and getting back into the hospital routine. The big news last week is that we received his Minimal Residual Disease (MRD) test results and they came back negative after his first round of chemo. That is great because it means Alex’s cancer has responded as hoped to his Chemo so far. I think it is also needs explaining that this test stratifies Alex's prognosis even further. According to COG in 2013, kids that are in his risk category that are MRD- after their first “induction” round of chemo have near 70% chance of staying in remission vs less than 30 % should he have been MRD+.
June 6,2016: Alexander has done well since moving up to the Oncology ward from the ICU. We are awaiting the results of how well the cancer responded to treatment and are currently at home awaiting his blood counts to improve enough to start his second round of chemotherapy. That may be as early as tomorrow after a few nights here at home. Alex is in great spirits after a weekend of Lego-building, short extended family visits, and playing with this two brothers.