Alden’s Army - Tackling brain surgery head on.
Update 10/20/21: Good Morning Alden's Army!!!
As you all know, Alden underwent a very aggressive second brain surgery this past Monday. It lasted just under 5 hours and he came to just before 5pm. He was alert, in a lot of pain and very swollen. He drifted in and out of sleep for the remainder of the day.
The doctor ended up taking more of the ventricle (by scraping) than they anticipated because of where the tumor was growing. With the speed of growth after the previous surgery, she didn't want to take any chances. They also had to shave the vessel off which thankfully didn't bleed as this was one of the possible complications Ange and Lawrence were told just prior to surgery. He could suffer some temporary short term memory loss due to where the tumor was and how the doctor had to do to remove it. However, his left side is working normally and coupled with his age, the left side can compensate for the right side if need be. So far, Ange hasn't seen anything to indicate he has suffered any memory loss. He did end up receiving a blood transfusion while in the OR.
Yesterday he was still in quite a lot of pain. They put him on a low morphine drip to keep him comfortable and supplemented with Tylenol. He was experiencing some light sensitivity, so they kept the lights low, curtains closed and a damp cloth over his eyes. Unfortunately, he developed a fever. Blood and urine samples were collected for cultures and came back clean. Over the next 5-10 days, Alden could have some fluids leak from his wound; they'll be on the lookout for that as well. If there is fluid build up, they may have to drain it. As the day progressed, he became more alert, able to interact more and move his body more freely. He was slowly starting to come back to his superhero self. Alden also went for an MRI to see if they in fact did remove all the tumor.
We received the MRI results this morning. There are a few spots they aren't sure whether its tumor or scar tissue - this will be closely monitored. Currently, he is getting another blood transfusion to boost his hemoglobin. All in all, they are very pleased with his recovery and hitting his milestones (heart rate, responses, mobility, interacting etc). Ange had him laughing a bit this morning during a stuffy play session. These are all fantastic signs with his personality coming through and thankfully not impacted! He is propped up in bed to help alleviate some of the pressure on his head.
Following surgery, in approximately 2 weeks time, he will start radiation followed by chemo shortly thereafter. There has yet to be a confirmed start date. We are very fortunate that radiation will be done in London and not in the U.S.
I will provide updates when they become available. I appreciate all your patience as I took a little more time giving a detailed update. I wanted to be thorough and have the MRI results. I hope this makes sense as I am NOT a doctor and there was a lot going on!
Thank you all for the continued love and support you all have given us over the course of Alden's journey. We are beyond grateful. Continue to kick butt Alden, we're behind you every step of the way! Love you little man!!!
Much love to you all
#ALDENSTRONG
#AldensArmy
Update 08/26/21: Good day Alden's Army.
Ange and Lawrence were given Alden's chemotherapy 'road map' which is an itinerary for treatment and what to expect. He will need 154 days of treatment with radiation added at a later date and time that has yet to be determined. He started chemotherapy Tuesday August 24th for his Primary Intracranial Ewings Sarcoma diagnosis for a 2 day treatment. Alden's primary Doctor did some research on this type of rare cancer and to date, there are only 4 documented cases with Alden being the 5th and the youngest.
August 24th, Alden received his first type of chemo med(s). Prior to receiving these chemo med(s), Alden must first receive a mass amount of fluid in addition to medication that will coat his organs to minimize the damage from the chemotherapy. (This will be given with certain types of med(s)) Alden will also be given a G-CSF (Granulocyte-colony stimulating factor) which is injected directly into his subcutaneous tissue to promote the production of white blood cells. Once the adequate levels of these cells are met, he will be checked every 48-72 hours to ensure the white blood cell count remains at the baseline needed to continue treatment.
On day 2, prior to the treatment, Alden did vomit at the smell of waffles. Sadly, this is to be expected with chemotherapy along with the rapid change in his taste buds, sensitivity to foods and their respective smells. A Dietitian and Nutritionist have been added to the already long list of Alden's multi-disciplinary team to ensure his dietary needs are being met throughout this journey.
Alden will be going home today (August 26th) after he receives the G-CSF shot (see above description). Starting tomorrow, Ange and Lawrence will have in-home care, August 27th, to administer the G-CSF shot until those baseline blood count levels are achieved. As of right now, he will receive the G-CSF shot daily, for 7-10 days and will be monitored every 48-72 hours to ensure the levels are stabilizing with blood counts rising. Once the needed blood counts are present, he will still be checked every 48-72 hours to ensure the needed counts are met and maintained. Ensuring his blood counts are good, is crucial to the continuation of treatment. If his blood cell counts are not good, it could mean his treatment is delayed.
Tuesday August 30th, Alden with have an additional chemo treatment (same as the first type of med(s) given on the 24th & 25th ) and will return home the same day.
September 7th, he will undergo the 2nd type of chemotherapy med(s) (different from the 1st type he started with August 24th & 25th respectively) and this will go on for 5 days where he will be admitted to the hospital, once again.
Alden will alternate between the two different sets of chemo med(s) each time he goes in. While this is ongoing, there was also talk about doing a local control which ultimately means there could be a second surgery prior to the start of radiation. The second possible surgery and start of radiation is still undetermined as of right now.
Other important factors:
Meds & Types – Alden will be given 2 sets of different types of chemo meds (Type 1 & Type 2) that will alternate between each set of treatments. Within each type, some of the drugs are given more often than another type of drug that is administered within that scope of treatment. Type 1 meds was the 24th & 25th as well as the 30th; type 2 meds will start Sept 7th. They will alternate between the 2 types during the course of his treatment. In addition to this, he will also need a medication that will coat his organs to minimize the damage to his body from said drugs. He will not need this medicine for all the medications, only some.
Neutropenic – the doctors will be watching closely to ensure he doesn't become anemic. If that is the case, he will need a transfusion.
Pneumocystis jiroveci pneumonia (PJP) – Alden will be given medication to take over the weekend to prevent this type of infection that is common in people with weaken immune system from treatment.
Yes there are 154 days of treatment. This is not consecutive as his body does need recovery time in between treatments.
Most importantly!!!!! Alden has ZERO immunity. That means if anyone has the slightest bit of a cold, sore throat, sneezing, something as simple as a scratchy throat...do not....I repeat DO NOT come anywhere near anyone who is directly in contact with the family or Ange and Lawrence themselves. Ange and Lawrence value their friends and family and need a social life but at the same time, please be conscious with whom you hang out with if you're going to visit with them. Our top priority right now is ensuring that Alden doesn't develop anything outside the scope of his treatment that could jeopardize any part of that.
Much love to you and thank you for the continued love and support each one of you has bestowed upon our family!!!
#Aldensarmy
#Aldenstrong
Update: 08/13/21 Ange and Lawrence received the final pathology results....Yesterday at 5:30pm, they finally got the call for final results.
'Alden has Ewings Sarcoma, this is a cancer that is usually found in the bone and is extremely rare to be seen in the brain. This is a very aggressive cancer and requires an aggressive treatment. He will do 4 weeks of high dose chemotherapy. He will need a bone marrow test, a PET scan and an EKG before treatment can start. They want to make sure the cancer hasn't spread anywhere else, but we are confident with a clear spinal tap that this is only in his brain. They mentioned radiation afterwards with the potential of needing to go to the states to receive it. This journey feels like it is just beginning, thank you for all the continued support and keeping us in your thoughts.'
#AldensArmy
I reactivated the GoFundMe Page as there are going to be costs incurred again during this hospital stay along with the travelling back and forth for the multiple tests needed prior to the start of treatment. The doctors also mentioned radiation after the chemotherapy. However, this additional treatment may require a trip to the US for an undetermined amount of time.
Alden is suppose to start chemotherapy August 23rd and will be admitted to the hospital, in London, for 2 weeks. Upon the completion of the 2 weeks, Alden will be at home for 2 weeks before restarting the last 2 weeks of the chemotherapy. From there, we are not sure what lies ahead.
To get the most updated information, please don't hesitate to check out Alden's Army on Facebook. By becoming a member, you'll be notified when we post.
We cannot thank our friends, family, the community and all those who have reached out from far and wide to send love, support, prayers, donations, well wishes. ALL, I mean ALL of that helps BIG TIME!!!
Alden Strong & FCUK CANCER!!!!
Update: 08/02/21 As most of you all know by now, the pathology results came in and it wasn't what anyone of us anticipated or expected. Deep breaths....
Alden's tumor is a grade 4, neuroepithelial tumor which in most cases is benign. However, this particular tumor is cancerous, aggressive, is extremely rare with a high likelihood it could return. A second opinion is needed for a potential alteration (BCOR) that will determine if chemotherapy can be an option. He'll more than likely require radiation; however, this is still unknown at the present time.
Because this cancer is extremely aggressive, our dear little Alden will be undergoing 30 consecutive days of radiation. During the course of his treatment, Ange, Lawrence and Alden will be travelling to and from the hospital daily where they will sedate him, put his mask on and administer the treatment. The treatment itself would only be 15-20 minutes but since he needs to be sedated, each time, the length of time will vary with each visit.
The radiation itself may affect his memory and future development associated with learning. They don't suspect it will affect his mobility as the tumor is far enough away from the pituitary gland. Tuesday, August 3rd, Alden will be getting fitted for his personalized mask that will be used for the duration of his treatment. From there, the hospital will be in contact as to when they will book a day surgery to put a port in his body for the radiation.
Alden has an entire team of specialists, surgeons, doctors and nurses who are dedicated to helping him 'Kick Cancer's butt.' Once the team has identified whether the alteration is present or not, the port is in (with no issues) and mask is ready, they will be in contact with Ange and Lawrence with a date to start radiation. As stated above, from this initial date, 30 days of treatment - consecutively - will begin.
I'd like to personally thank each and everyone of you for continuing to show love and support as we continue to navigate through this journey, the results and the treatment he will have to undergo. We will continue to update the group as best as possible when we have the information available.
Much love to you all and FCUK CANCER!!!
Alden Strong!!!
Update: Alden is home and recovering well - our little miracle. He underwent brain surgery July 5th. The doctors were unable to remove all of the tumor leaving a small portion of the cyst wall behind. For now, it will be monitored. Once the pathology results are known (in the next 1-2 weeks), the doctors and family will have a much clearer idea of what will happen next.
For regular updates, please check out Alden's Army on Facebook.
Hey Alden’s Army. We’re raising money for the expenses that will be necessary for Alden's upcoming brain surgery, recovery and related expenses.
Our dear Alden was admitted to Sick Kid's hospital early Saturday with news that no one would have ever expected or anticipated. A CT scan revealed a large mass located in his frontal lobe, which in turn is putting pressure on his eyes and surrounding tissues which has now caused a secondary hydrocephalus. He may need a stint put in after surgery to ensure all fluids continue to move around his brain properly. The tumor is potentially deep inside his brain tissue and the doctors are hoping they will be able to remove the majority of the tumor and accompanying cyst that surrounds it, however they will not know until they explore the area.
There are a few different ways a tumor presents itself, each with it's own challenges. The type and grade of the tumor will dictate the treatment post-op. He will most likely be receiving some form of chemotherapy following surgery to ensure the growth is gone. There are signs suggesting it is a grade 1 or 2 tumor, meaning less treatment and that it is likely benign. However, there are other factors suggesting this is a stage 3 or 4 tumor meaning a more aggressive care plan post-surgery.
As of this moment, it looks like Monday July 5th Alden will have his surgery, although were tackling this on a day-at-a-time basis and that is subject to change. This could take anywhere between 8-12 hours.
Alden has been such a brave boy, earning bravery beads daily for all tests completed by the doctors and nurses. He's hanging in there as much as a little guy can, as are Ange and Lawrence as they make their way through this difficult time.
Any and every bit of support is appreciated by all of his friends and family, whether it be monetary, the positive messages we have all been receiving or keeping Alden and the family in your prayers. Thank you so much to everybody.