Tag Archives: Cancer Sucks

Molly

I’ve written about childhood cancer before and my son’s battle with it. I’ve wanted to share some of the blogs that I read daily of other kids fighting this beast but most expect some level of privacy and linking to them on twitter would be crossing a line. Molly’s family has already made things very public and tweets about her have already appeared in the #DadsTalking hashtag.

Molly who is all of 4 weeks old was diagnosed Christmas Eve in Victoria, BC with ALL (Acute lymphoblastic leukemia). As with all children in BC she was sent to BC Children’s Hospital. In her case she was considered critical enough that they sent her by helicopter. Victoria is about 3 hours travel time from Vancouver where Children’s Hospital is. That is if you hit the ferries right otherwise its about four. They would have started treatment immediately and probably in the PICU (Pediatric Intensive Care Unit). Both parents got on the helicopter with her. This meant they were in Vancouver while their 4 other children, 6 and under were at home for Christmas morning. There is a lot more on their website to go read including progress updates. Molly’s Website

BC Children’s is where my son was treated for his neuroblastoma. I can’t say enough about all the Doctor, nurses and other staff there. I know they will get the best possible treatment. Right now they are in the shock stage. To much is happening, they have a million questions and not a lot of answers. In the coming weeks things will get worked out and they will settle into the treatment routine. The community will step up and work to remove the extraneous concerns they have and leave them to focus on their daughter and family.

What can we do to help? Obviously money is the most direct way to help them and they do have a donate button on their site. Some less direct ways:

Prayer: Say a prayer for her and her family everyday. I’ve also seen people organize a 24 hour vigil where people take 30 min turn praying over a 24 hour period for those particularly difficult times. I may try to organize these latter in treatment if there is enough interest.

Donate Blood: These kids go through a lot of blood products. Chemo kills of any fast growing cells. That included hair, and blood cells. They can top off the red blood cells and the platelets. The white blood cells they can’t and that is why these kids are so vulnerable to infection. In Philip’s treatment he needed a total of 33 units.

Canada: Blood Services
USA: Red Cross

Register to become a Bone Marrow Donor: I can think of four kids off the top of my head that are alive today thanks to an anonymous Bone marrow donor.

Canada: Blood Services
USA: National Marrow Donor Program

I have some other idea but those require more information from the family and more organization so we will see. If you do one of these actions let me know and I will note it. It would be nice to see the power of the #DadsTalking group.

Update: As I said above the community came together and they have found accommodations and raised just over $70,000. They are planning on donating any excess to the hospital.

Scans, Kids Cancer and Stress

Scans

*** Update:

We are now 6 months past this blog post and that means it is time for another set of scans. This time around I am driving down and taking my daughter. So thats a 5-6 hour drive depending on stops and traffic. I also now have a smart phone so I will be able to tweet. No Audiology appt this time. On the way back up I drop the kids off at Camp Goodtimes, a wonderful camp put on by the Canadian Cancer Society.

*** Original Post:

This week will find me and Philip in Vancouver getting his six months scans. Every six months we go down and he gets an injection of a radiopharmaceutical called mibg. This stuff attaches to Neuroblastoma cancer cells and has a radioactive tag on it that allows imagining. It will tell us very quickly if the cancer has come back. Needless to say this raises the stress level in the house.

Right now everyone is on edge and much closer to snapping at others than we usually are. Given that we have been doing this for just over 5 years now we have come to recognize the symptoms of that stress and try to deal with them in a healthier manner. Saturday found my wife and I arguing over nothing, my daughter whining and Philip quicker to anger with his siblings.

So how are we dealing with it? First is we acknowledge the source of the stress and everyone takes a step back to sort of realize that we need to be more in control of our feelings and actions. We pray a lot about this to guide our action. Our morning prayer from my last post take on more meaning. Second is we recognize that we are all going through the same stress and we may need to help each other. Third we try to do fun distracting things during this time.

We also only have Philip and one parent go down. Five personalities in one room with a pair of twin beds and that much stress is not a pretty sight. By Wednesday we will have a pretty good idea what the result are and the stress will ease off.

We’ve had 20+ of these scans so I have a good idea what to look for. First I can look over the shoulders of the techs and see what is going on and I have better that a layman’s idea of what to look for. Second I know if they add any scans that there is cause for concern.

How it works. We fly down Tuesday morning, in the afternoon he gets his injection and is mildly radioactive for the next several days. Wednesday we get the first scan while there is still a lot of the tag in his system. Next he gets a nasty pill that is guaranteed to clean out everything… Hmmm what is the best way to put this… in the #2 exit. On Thursday he gets a second scan that gives them better resolution with less of the tag in his system. On Friday we get the official results and a review/checkup with our oncologist. This time we also have an audiology appointment to check his hearing. He has some hearing loss but that is another post.

ScannerThe pictures are of the machine that does the scanning. The bed he is strapped to moves in and out and the round bit rotates around him. There are two sensor that pick up the radiation from the tag and map exactly where it is coming from. They can make a 3d map of him from head to toe. He is in the machine for about 1.5 hours. Once his head is out he can watch a movie on the screen above him as long as it doesn’t cause him to move. Last time he picked Jumanji and we had to turn it off because he was laughing to much. We watched it that evening.

I appreciate any prayers for my family particularly for clean scans and less stress. Thank you. I will have limited internet access so I can not guarantee any tweets or responses until Saturday.

Scariest Day

Philip TransplantWe are one day away from winning $250,000 from Pepsi to fund research in to childhood cancers particularly Neuroblastoma.  Neuroblastoma is the cancer that my son beat twice. The survival rate for relapse in Neuroblastoma is very low with only about 5% making it.  We were actually told that we had to think about Philip’s ‘Quality of life’ which basically means life remaining yet that wasn’t the scariest day nor was the day he was diagnosed. Both are way up there.

The Scariest day was while he was getting his stem cell transplant.  Part of the way through his treatment they harvested stem cell from Philip and froze them for later.  At the end of the treatment to get any hidden cancer or stuff that adapted to the chemo they gave him mega dose chemo that wiped out his bone marrow.  They then gave him back his own stem cells to regrow his marrow.  During this time he had zero white blood cells and therefore no immune system.  We were in isolation with strict rules such as wiping down anything that came into the room with alcohol, hand washing, gloves, and masks.  The picture is on his first day out of isolation and is his 4th birthday in the playroom.  They reserved it just for us so we could celebrate.

One day I woke up in the room with him and a nurse comes in to tell me that there is something funny with his counts.  They do blood work every morning. Soon there is a Dr in the room telling me that his potassium is to high and they are looking into it.  Then a second  Dr who says it is way to high they must act now.  Very quickly the room is full of people the door that is supposed to be never open is wide open. Nobody is wearing a gown or a mask.  Somebody is explaining to me that too high of potassium can cause heart failure and his is way to high.  Everyone is talking way to fast and multiple emergency procedures  are happening at once. At this point I watch a nurse wheel in the crash cart.

Through all this Philip was fine wondering what was going on.  We never did find out what caused the spike.  They are sure that it was real as they ran blood work through the day and we watched it return to normal.  He survived that day and the rest of his treatment, a relapse and has been cancer free for 2.5 years and off treatment for 1.5 years.

Please go and vote at PepsiRefreash for “FUND LESS TOXIC THERAPIES FOR CHILDREN WITH CANCER Arms Wide Open Childhood Cancer Foundation” There are 3 ways to vote: 1.) From your cell phone Text 73774 and enter the code 102653. You will get a confirmation text back. 2.) From your computer go to www.tinyurl.com/taypepsi 3.) Go to Facebook and search “childhood cancer foundation”. Join the page download the facebook app. Here is a link: http://tinyurl.com/armswideapp

Use all three methods to register 3 votes each day.  Voting ends Sept 30th at midnight.

Two YouTube videos to break your hearts.  The singer is only 12.  Such talent and such compassion.  Abby you have made the world a better place. Thank you.