One Week Later

A week has past since we received the news about my donor search. The first couple of days were really hard. All I could think of was what could happen and believing the worse. Things are a bit better emotionally. I have still have moments where I just can’t handle it but I get through them.

Aaron and I have done a bit of research on umbilical cord transplants and though it will be a difficult road, there are also a lot of positive elements to it. We also have looked into what happens if a transplant isn’t a possibility. I have a bunch of questions to write down to talk with my doctor about. In the U.S there are medications that can help. I am not sure if it is available here. We didn’t talk that far ahead. Aaron is already exploring what the states has to offer. So as you can see, I AM NOT GIVING UP!

On other issues, I continue to have extreme upper abdomen pain. Saturday was a very bad day. It knocks me down for a full day when I get it. Partly the morphine. The morphine helps the pain though. I had a scope put into my stomach last week Friday and my stomach looked good. Today I go for an ultrasound on my gallbladder. I hope they can figure this out because it is not fun to deal with. On top of that I have 2 bad tooth aches but the dentist doesn’t see anything wrong. It is frustrating. I also deal with very bad lower back pain still. I guess that’s the joys of a bone marrow cancer. It does make going out and doing anything very hard. I am going to remind my doctors that I would like physio. ๐Ÿ™‚

Today I am picking up Madison early from school and taking her to Vancouver with me. She can see what I do when I go. Her and I and her friends had a wonderful time at the Mercy Me concert last week. She was pretty happy that the opening act was a band she really liked. I still have to find a way to celebrate her 13th birthday with family on her actual birthday but I will make it happen. I start chemo in a week and that means on her birthday ( June 2) I will be pretty weak.

The plan now is to start high dose chemo . This will be everyday for 6 days. I am counting on it starting next week Tuesday but will know for sure today at my appointment. Hopefully we will find out in the next couple weeks if umbilical cord transplant donors are found. I am nervous but hopeful. God has given me strength and courage to keep going and I will keep praying and relying on Him for all of my needs. Being sick has opened up a whole new window into God’s grace for me. I am thankful to be given this gift. It gives me some peace. It makes me keep going. It has changed me.

I would like to take the opportunity to thank everyone for your prayers, gifts, meals, house cleaning, hugs, encouragement. A special thank you to those participating in the Relay for Life for me. Our family will also be participating and I hope to do the survivor lap, if I am able to walk. If you would like to join our team, please join. We all have people in our lives who are affected by cancer. I think of Ryan.S who is doing well but still has a tumor living inside of him. Krissy.L who was just diagnosed with a cancerous brain tumor. Mr.Sikma who was diagnosed at the same time as me with colon cancer. Greta. H who lost her battle to breast cancer. Dave. B who lost his fight to leukemia. Uncle Roger who lost his fight to a bone marrow cancer.ย  The list goes on and on. It will be a very meaningful night. All the info is in the link here : RELAY FOR LIFE

Mother’s day was a little extra special this year.

Thy Will Be Done

Joshua 1:9

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.โ€

In all circumstance praise God, call on God, cry to God, devote your life to living as His child no matter if you are happy with the plans He has for you or not. Most importantly trust God. God knows theย  path of your life. We can live with confusion and low understanding, but need to put our hope and trust in him alone. I pray he will give insight to the doctors that are working with me. I trust that His will be done and He will guide the doctors. I pray that He will grant me peace in my heart because what I am feeling write now is far from peace. I am scared. Here is a run down on the appointment yesterday…

Throughout this journey I have tried to be very optimistic. I trust God. I trust His ways to be good no matter what. I went into yesterdays appointment feeling very confident that the news was going to be good. There were many things said that had me believing that a good match had been found. A match had been found. 1 person. A 10 out of 10. The problem was that when further testing was done my antibodies rejected it. I have antibodies that have been built inside of me when I got pregnant with all my babies. So my body goes on defense mode and rejection happens. So the risk is too high to give me these donor cells. What you need to understand is that once my body is prepped for transplant, donor cells HAVE to be put back in me. If my body rejects them, with only 1 donor available and no other cells, I die. 100%

So at this point they are now actively trying to find me a cord donor. So thats umbilical cord stem cells and I think some comes from the mothers placenta at the time. There has never been blood taken from the baby and no cells will be taken from the baby. Right now this is my best chance of survival. Because cord blood is not a lot, 2 donors need to be found. With cord transplants there are a lot more things to deal with. The pre treatment before the transplant is quite intense. I will be getting 2 different chemo drugs that I haven’t had before. With these drugs your symptoms are heightened excessively. So all the normal chemo drug effects are a whole lot worse. On top of that I will need high radiation. I believe it is total body but not 100% sure. Part of the problems that come with this is large sores in your mouth and throat and swelling. I would be equipped with a pain pump I was told. I am not sure how I will eat but I have seen people who have gone through similar things have feeding tubes. Aside from this recovery with cord blood it’s also a lot trickier. When you get stem cells from an adult donor you are getting a bit of immunity because of them having gone through childhood illnesses and such. With a baby there is no immunity yet. So my body will be starting from scratch. This means that I will be closely watched for years. Recovery is a lot longer.ย  So to say I am scared is an understatement.

What happens if a cord match is not found? At this point they will be testing the 4 kids and my parents. They are all a half match but the chance of rejection from these antibodies is very high. They are not going to start testing until the possibility of a cord donor is looking slim.

Unfortunately these are my only options and they will only work if the matching works. They will only be doing 1 more round of consolidation chemo and them will stop. There will be no more treatment unless they do a transplant. I start this chemo after the May long weekend. This was the hardest pill to swallow. I have basically been given a 60% chance of survival. It is not enough to make me feel good.

Yesterday was emotional. I literally cried all day on and off until 1 am and then finally took something to calm me down. The things that go through your mind when you are in a situation like this is unreal. For some reason I seem to be looking at the 40% and thinking this is it. I see my kids and cry. I sat by their sleeping beds last night and cried. I picture graduations and girlfriends and boyfriends and picture mothers days and graduations, weddings. It is like I am mourning what I would be leaving behind and the pain is unbearable. Like nothing I have ever experienced or want anyone to ever experience. Words can’t describe it. Maybe I need to go through this to get to that place of peace. I will continue to put my hope and trust in God. Whatever His will is. His will be done.

What can you do? I get asked this a lot. Please pray for my kids and Aaron. Send them a personalized card. Be there for them if they need someone. They are going through similar emotions as me.

Pray that a cord donor is found and that God will grant me the gift of time. I need more time.

Thank you for those who have prayed and continue to pray and support us. We need it.

We are thankful that we have been given the gift of family time together. We will be going away for the long weekend. I am happy we get to do this after such a tough 4 months. I also get to take 5 13 year old girls to the Mercy Me concert tomorrow. Hopefully they wont be embarrassed by the blubbering mom. Christian music hits my heart.

Apparently I Missed the Hospital…

Long story short, I have experienced some pretty horrible pain which landed me in Surrey emerg for the day yesterday. It sounds like my gallbladder but no stones were found. I was able to get some strong painkillers and that helped. After coming home I had a bit of dinner and it came back. Thankfully the hospital sent some morphine home with me and I took it as soon as I felt the pain. I was left with some pretty purple bruises from the IV they tried to put in . They weren’t familiar with the Hickman line. 


I was told by the BMT nurse to call 911. I had the best paramedics. 2nd ride in an ambulance in 3 months. I didn’t sit shot gun this time. Today I feel better. I’m tired after a morning at track and field, but it was worth it to watch Gavin on his birthday. 1 more year till learners! Woohoo. Now I’m sitting on my patio watching the lightening. 



The storms coming. I love storms ๐Ÿ˜€

What’s Next?ย 

Round 3 is over . My counts are recovering and I don’t need to be isolated anymore. So that brings on the question, what’s next? I was hoping today I would have some clarity on that question but I don’t. I do have speculation though. Last week Friday I asked the transplant team for an update. They couldn’t tell me if I had a donor but I got the impression that they were in the works of finalizing my search. I was told I should hear in the next week or 2. On Monday my head doctors office called to book an appt for me. There wasn’t a reason for the appointment. My other doctor said the next step is transplant, that they can only do so much chemo. So whether or not I have a match, I’m going to transplant. They haven’t tested any of the kids which makes me think they have a donor. On May 9th I will have all the answers. For now I need to just be patient. I get an 8 day break ๐Ÿ˜Š. I will try not to think about it. 

In other news, every time I go to the hospital I pass this bakery. 

Marie and I have said since February that we are going to stop in for lunch there one day. I’m always neutropenic though. Not today though. We finally went. What a nice bakery . It was swarmed with people. The food was delicious. It did not disappoint. 



Anyways, this blog might be quiet for a bit. I will be enjoying my break . ๐Ÿ˜€

Pain in the Bones

Yesterday at my appointment it showed my counts recuperating. WBC 1.8 , platelets 50 , Hgb 100 and neutrophils 0.0. So that means I am pretty well at the end of my 3rd round.  Tomorrow’s appointment I am hoping that my neutrophils have gone up. It’s pretty isolating being neutropenic. It also has caused me to have a low grade fever for the last 48 hours. Thankfully it didn’t hit 38 and this morning it seems to be gone. I am hoping for an update on what’s next. Not sure they will have a plan yet but here’s hoping. 

This third round has hit me a bit harder than the last one. I’m very short of breath, the fatigue is really bad. Yesterday I had to sit down after only walking for 1 minute . Everything hurts. My lower back especially. I have pain in my pelvis and down my legs. I have had this from the start but it seems to been worse the last week or so. I also experience bad headaches that seem different from my usual ones while going through chemo and especially when my counts are low. After getting blood last week I felt a lot better. 

I am learning to be patient. One day at a time . You don’t know what tomorrow will bring. God is in control and I feel His nearness with me everyday. I’m so grateful for that. Aaron has been wonderful and encouraging as have many of you. I thank you for your cards, prayers, house cleaners , meals, gifts. We are thankful for the support we have received. 

Tania

2 Corinthians 1:3-4

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.


Cards from grade 1 at WoFo. โค๏ธ

I Have Platelets!

My HLA platelets arrived from Edmonton and are now floating around my blood stream. I’m very happy that my platelets were 3 this morning because it’s higher than 2 and means my body will be producing them on there own in the next day. After my transfusion they drew blood and I am happy to say it worked and I am now at 39. This means I get tomorrow off from going to the hospital. It’s been awhile since that happened. Have a good weekend!

The Latest in my Life

Here is the latest update. I am on day 14 of this round. My counts are very low. I had platelets on Sunday, Tuesday ,Wednesday and today. Only had 2 bags of blood on Tuesday. Since Tuesday my platelets have just continued to drop. They were 10 and after the transfusion they did a post blood test to see if they went up, they didn’t. They actually went down to 8. The next morning platelets were 4 and post blood test , they stayed at 4. Today I knew they were even lower . I broke out in bruises and  petechiae everywhere. It’s the worse it’s ever been. Today my platelets were 2 and after they were still 2. I just had a blood vessel burst in my eye ( its little )  so I’m guessing I have hit 1 now. Going through this means daily hospital visits. I was looking toward to Gavin’s first track meet of the season but I guess I will have to try for the next one. Tomorrow I get more platelets and I’m hoping they are the HLA platelets that have been donated special for me from someone in Edmonton . 


I have a mask on when I leave my bedroom because Brandon is coughing . Today my neutrophils hit a big whopping 0.0 . Which always makes me scared I’m going to get a fever. Not scared but annoyed because when I have a fever, I have to go to VGH. Who wants to drive an hour when your feverish. Anyways so far so good. 

In other news, my social worker was going to request an update on my transplant situation. It makes me anxious. Waiting is something that I seem to do a lot of with this disease. We will see if they tell me anything. 

Couple of interesting facts. My hair is coming in. I prefer being bald over stubbly. It feels too weird. So I’m going to shave it because it’s going to fall out anyways. My eyebrows are falling out but growing back at the same time. My nails are growing and are strong. My eyelashes are little. At least I still have some. My psoriasis is gone. Woohoo. 

I hang out in my room a lot because of illness and the danger it bring me. So I purchased a hospital table. I can use it to eat or watch Netflix. I’m pretty happy about it. Here it is…

And just for fun because my cat is cute. He right away climbed into the thin box and layed down. You can only see his eyes.