Bc cancer agency

Most of you will be reading this early Wednesday morning, we will be on the road already. Kourtney has a pet scan tomorrow. If all goes smooth we should be done by 1000 and hopefully Home before lunch. But I have a feeling that it may not be easy. When I received the call about the appointment I was flat out told they would not use a picc line to put the contrast in.(  I contacted the radiologist that put the line and he gave the clearance to use it.. So I am not sure how that will play out tomorrow. Nothing is ever straightforward with her.

I knew this day was coming but nothing could of prepared me for it. I have been paralyzed by fear, I have kept myself busy with cleaning and organizing, but find myself having to lay down beside Kourtney or sit next to her that is if Lexi our dog isn't beside her. Lexi knows there is something  up. Kourtney  assures me the scans will be fine however both of us know the cancer is still there and it's going to take another couple of surgeries to see it disappear. . And as per the textbook anything short of  a miracle  the cancer will return.  Speaking of miracles it's Shaes birthday on Friday, anyone who knows her story knows miracles can happen. Although it hasn't happened for Kourtney we pray for the cancer will be gone and never come back.

So how do you pray? How do you talk to aGod? How do you live not being paralyzed by fear.? A dear friend of mine just lost her child before Christmas. Her daughter had so many odds stacked up against just like my Kourtney. I asked her how she had to process knowing her child's life was going to  be short but they are suffering? She spoke wise words and said you need to pray for mercy. That made so much sense and I received peace from it.

The one thing I have to keep perspective on is  Kourtney isn't sick. Although there is cancer in her body she still can still go out, move eat and of course go to Disneyland. Our goal is to get there in 3 weeks. If the scans are clear she will have surgery soon, if the scans aren't clear that's a whole  new level of conversation. Praying for clear scans.

I am off to sleep, I have an early morning ahead.

Monday

Today I feel like I have been hit by a truck. Feeling directionless scared and overwhemed. Todd was in the ER twice yesterday with a sore elbow. First time he was diagnosed with tendinitis second time bursitis with possible cellulitis. Todd first started having pain on Friday after an exercise class. We all did the eye roll around here , Shae said he had OLD syndrome. The pain ensued and of course Sunday was the day when he couldn't take it anymore. After one course of IV antibiotics the pain has lessened in severity and he will continue using oral antibiotics.

Kourtney had a good day. Her pain in her right hand is under control except during and after the dressing change. Still waiting for the call for the Pet scan. Praying it will be soon. Today we are headed into Vancouver for a dressing change just on her right hand. Now that we know it's cancer on her hand it explains the pain so it justifies sedation and pain control for the rest of the day., It bothers me the cancer is there. I don't want it in my house. I don't want it preying on my daughter and I don't want it spreading. That's all I have to say.

Today is just a rotten day, most likely because I am so sleep deprived. Today is a day we need to be covered in prayer.

Textbook

Today was a good day. In the last 24 hours the people who have been the most reliable and most consistent  showed up today. We were entertained by cute toddlers, a baby an a standup comedian practicing for her first event, a friend who made us get out of the house to eat at the spag (Spaghetti Factory) and our dear friend and stand-in grandma,  Cheryl.  We were also blessed by emails, flowers from a cute pregnant mama and an oh so sweet lady who sent her cleaning lady over, (cost covered) to clean up our very dusty, cat fur covered home. I even got called on a cancellation list to come in for a massage. It was sweet.

The question that everyone is asking is, "What is next?" To be honest I really didn't want to know or care to know. When Dr. C told Kourtney the news, he said, " Your mom can phone me anytime." Seriously, when does a doctor say that?  I felt that Kourtney had a good handle on the information he provided but my brain had already kicked into high gear I didn't want to over process it. I thought we could go as a family and talk about the plan. Unfortunately, Dr. C wasn't going to be around on Friday or on Kourtney's dressing change on Monday. So his sweet receptionist said, "He would be more than happy to talk to you on the phone." Gah. It's not what I wanted, but I knew I needed to get the conversation over with. 2 minutes later Dr. C called me. He reassured me and made me sick all at the same time. He said although the reports are reassuring and that it's not metastatic, not in the bone and only superficial, the margins were not defined which means it has the potential to spread. He wants to make sure it has not spread to her lungs, liver or brain.

Kourtney's EB has been almost a textbook case.  I say almost because 5 years ago Kourtney made a miraculous recovery.  Improving her nutrition and getting her pain under control gave her the reboot her bone marrow needed.  This  typically doesn't happen with EB.  The pain and chronic open wounds become the catalyst that drives EB families to seek alternate treatment in their teen years. (We had a pretty amazing 5 years to be honest).  However, now we are back on track with the textbook, the cancer starting earlier for Kourtney than most adults with EB. Cancer and EB have been foreseen from the first time we opened a textbook (20 years ago we had no internet access)  This is what makes Dr. C an expert on EB as he looked after 2 adult patients that lived into their fifties. The reason he didn't trust the initial biopsy reports and the reason why he is getting her in for a scan quickly.

There was a cancellation for a pet scan at the cancer agency on Wednesday. Dr. C still had to get all the info in for Kourtney so he wasn't sure if it was given to someone else. I know he will get the job done. Nothing will happen until we receive the results of the pet scan.  That's  when the next decision will be made. Until then we celebrate Kourtney not having pain and me spending time at home with no distractions from work. We know we are covered in prayers and support from friends and family. Right now we ask for peace and sleep and more Sunshine.

Life on hold

3 months ago we returned from Disneyland. It's always bittersweet coming home from a fun vacation, however, there were more urgent matters to deal with upon our return. As I said in a previous post, I had really backed away from doing the dressing changes but in Disneyland I was more involved.  I was aware that her right hand was looking more broken down but this time I knew something wasn't right. I called in the troops to pray and love on our family. Although I continued on with my regular activities my body stopped functioning properly. I rarely get sick so my body finds other ways to cope;  my internal clock was turned off balance, insomnia ensued as did unusual events which I blamed on menopause symptoms. Emotionally I went into a very dark, black hole.

A week after our return we had an appointment with Dr. C. Todd, understanding the gravity of this situation, took the day off.  We were joined by a support team of Beth and Amber.  When Dr. C saw Kourtney's hand we knew just by the look on his face that there was something sinister brewing in the hand. For those following our journey, the initial biopsy showed it was a benign tumour, however, Dr. C wasn't convinced the results were accurate.  Although we were relieved, Kourtney's pain continued. Pain to this extent in one area is unusual for Kourtney. We knew in our hearts something wasn't right. I was chastised by a friend for taking it to social media, especially when the results were benign. But alas a moms intuition always turns out to be so powerful. I don't regret drawing attention to it so early on in the process. Social media receives so much negative attention, however, in our world it helps us cope so much better knowing that there are many people supporting us.

Kourtney's pain continued and the preparation for surgery began. Never could we imagine that the pain would only get worse.  As you know, the post-op pain from the surgery has been excruciating. We had to come to terms with the fact that there would likely be another operation. I even prepared our family that the only thing that may bring her reprieve was an amputation. Cancer or no cancer.

Last Monday Kourtney went to Children's Hospital for a dressing change.  Since she has had a picc line we have been taking full advantage of it. She is able to be sedated during the change which enables the doctors to take a good look at her hand and give it a good cleaning. She wakes up happy, hungry and ready take on the world. Monday turned out to be a delightful day. We brought our new caregiver in with us and gave her an initiation of sorts. I always feel so fortunate to get to know these young girls. They give our family so much life. It was fun showing her the ropes at Children's Hospital. Kourtney's anesthesiologist was the dreamy Dr. Cassidy, who wiped away drool out of Kourtney's hair while while he  put her into a medically induced sleep. He made us a laugh with an embarrassing story of his own to follow. We were told Dr. C had the results so we waited an hour for him.  It turned out that the results weren't in, but to be honest we were just happy to see him.  We know his heart is with Kourtney.  We then waited out traffic and went out for dinner with one of our most loyal caregivers, Meaghan. There are not many people that Kourtney feels comfortable around,  but when she does she can make everyone giggle. So many blessings came from that day.  I believe it was a way of preparing for the news.

I was at work. Kourtney received the call from Dr. C. Not good news at all. The cancer had come back aggressively.  The next step will be making sure it has not spread to other parts of her body and of course another surgery to remove more of the cancer or possible amputation of the hand.  Dr. C needs to consult with his colleagues as ultimately he wants to save the hand. At this point though it's not the cancer that worries me as much as going through the pain cycle again post-op. Kourtney maxed out her pain meds and has built up a tolerance so this most likely means a lengthy hospital stay. We are now bracing for the long journey. I have taken time off work.

There are so many unknowns at this point and I will continue to update the blog.
So how can you help?  The only thing we want are visitors, especially if they involve squishy babies and toddlers (we welcome everyone). Preferably with a cup of coffee and a London fog
croissant for Kourtney. You also would have to put up with two cats and a very needy dog. I also would love to learn to macrame, knit or crochet. If anyone wants to learn or has expertise in these areas let me know. Although we anticipate many Vancouver trips we will be home as well.

Although the results were not easy to hear, the amount of pain she was having was obviously a sign that things weren't right. I can't say I am relieved but I also know that once the cancer is removed things will start improving.Once again I am thankful for DR C, that he is the one in charge on earth and I completely trust him. We feel blessed to gave a great circle of friends who have embraced us.
 I will continue to update the blog.

MRP

As of today the biopsy results aren't back. The emotions are running high as this surgery has thrown us a huge curveball with the amount of pain Kourtney has been having. It came to a point last week when we had to start wrapping our heads around the idea that there may have to be another operation if this bewildering pain continued. Although the preliminary results of the biopsy showed no cancer, Dr. C. was still not convinced.  The results will determine the next phase. So many things are running through my brain. Finally, on Sunday our family doctor returned from vacation and took charge of the situation and became the MRP (Most Responsible Person - a medical term used in the hospital when a patient is admitted in hospital - usually a doctor who orders medications, procedures and consults.

It may seem like I am over involved; a micromanager or enabler. To be honest since we have had our funding increased I have done my best to back off. I haven't done a dressing change in months!  According to Kourtney I am not fast enough. Kourtney also doesn't like it when I get her dressed.  She often tells me, "How do you dress yourself when you can't dress me?"  To be honest it doesn't bother me. I am happy to back off. I think it's healthy and an important transition to being an adult. However, these last few months of arranging, organizing doctors, and figuring out the right pain meds it may not seem like I have backed off. Just to be clear I don't need to be needed. 

Last week we adjusted Kourtney's meds and did a dressing change with sedation.  I thought the pain was under control. I decided to work on Friday and my 12 hour shift went on swimmingly, without any word from Kourtney about her pain. I felt relieved. It turned out not all was well. Kourtney's pain wasn't settling AND I was told that Kourtney's pain medication was running low. So why was I just finding about this now? Friday night. When doctors aren't on call and turn off their pagers and cell phones for the weekend. (This medication can not be called in by a doctor. The physician has to hand write it out on a triplicate form, can't be faxed etc). After a gentle tongue lashing to her MRP of the day, Todd,  I could not dwell on it but moved to Plan B.

After several attempts at contacting doctors, I banked on the fact that Dr. C., being a workaholic, would still have his pager on.  Of course he was happy to help, however, it meant "TODD" had to drive all the way to Vancouver to pick up a prescription. Once again it just seemed so unfair.  That same day  I received a "kick to the stomach" that I didn't see coming. I can't and won't expand on the details however I have had to give it over to God. A difficult task as I have been wounded deeply. Although Todd dropped the ball the day before his redeeming qualities overshadowed a very minor situation. He has the ability to give me perspective, keep me grounded and loves me and our family unconditionally.  Despite our best efforts Kouryney's  pain continued.

By Sunday afternoon Kourtney was adamant she needed to go to the hospital to get some IV pain medication. I was in full agreement as I felt I was in over my head we were giving an insane amount of medication with no benefit. I felt helpless. In a last ditch effort I tried to get a hold of our family doctor on a Sunday afternoon. I don't take for granted that these doctors are so willing to help. But taking Kourtney into the hospital brings another set of problems. Doctors who don't know Kourtney's history have a difficult time wrapping their heads around EB nevertheless her 20 years of having it. Kourtneys  doctors don't want her admitted for because she is so complex. The long and the short was DR K became her MRP.  He acknowledged that this had been an erroneous weight on my shoulders and he would take over. He changed a bit of this and added a little it of that, called Dr C and voila the pain went away in an hour. No word of a lie. One little pill a strong antinflammatory changed her pain instantly.  It's been 48 hours and Kourtney is back to herself.

Now we wait......for the results. Thankfully Kourtney can leave the house and be more distracted.

So so thankful for the medical people in Kourtney's life. It certainly takes the pressure off not being her MRP but just her MOM.