Christmas 2014 Family Photos

Cade Family 2014: Ellie, Todd, Hannah, Kimberley, and Abby

Todd at his mom's for Christmas 2014

Todd with his mom, Anna Durdines.

Me and Todd.

How to Stay Positive: What we have been reading.

Many of you have been so happy to see Todd in such good spirits.  Not only is this because of his faith in God, and his belief in the healing power of prayer, but we both have been doing some reading to keep our minds from wondering off or getting negative!

So, here is a quick annotated bibliography:

1.  The Bible: of course!  I've been finding comfort in the Psalms.  But, its all good!
 
2.  The Power of Now by Eckhart Tolle.  This book is great for teaching yourself to control your self-talk and your thoughts.  There is great spiritual insight too.  While he refers to God and Jesus' teachings among others, you can apply his suggestions and see how much they are in harmony with scripture.

3.  The Prayer of Jabez by Bruce Wilkinson.  Our church had read and studied this collectively at one point, so I decided to re-read it.  It has reinvigorated me in how to pray and expect answers!

4.  The Secret by Rhonda Byrne.  Teaches to believe that good things will happen and to expect them.  The principles here are in harmony with what scripture teaches us, "You have not, because you ask not."  Having the Faith of a mustard seed, etc.

5.   Miracles by C.S. Lewis.  Need I say more?  For those of you who didn't know, C.S. Lewis, an avid scholar, was originally an atheist (since the age of 15), but became a Christian in spite of himself-unable to fight his conclusions that there is a God. He explores the existence of miracles in this book.

6.  Seeing the Joy in Affliction by Michael Shelley. This professor and Christian cam to speak to our congregation years ago. He was diagnosed with a terminal brain tumor but God had taught him so much that he wrote this book and used every opportunity to share it. I bought the book then even though I couldn't relate to it at the time; but it is a blessing to me now. 

If you have some suggestions, please feel to comment to this post!  Thanks!

Day +101: Platelet transfusion needed

Todd went into his local oncologist's office to have lab work done to check his blood counts.  He went in at 11:00 a.m. but didn't get home until after 4:30 p.m.!  His counts were down today: Hemoglobin was 8.9; whites 1.9 (1,900) and platelets at 9,000.  These were the preliminary results and they wanted to verify them, which took a bit longer, but the count was accurate. Since his platelets were under 10,000, he needed a transfusion of platelets.  Sounds straightforward...right?

Well, unfortunately, his local oncologist's office/cancer treatment center does not have a blood bank, so he was going to have to go to a local hospital to get them.  Since it was the day after Christmas, the cancer center was short-handed with only one doctor and a handful of nurses available.  He waited and waited for a doctor to sign an order for the transfusion and to get an appointment at a hospital that had platelets.  By 1:00 p.m. he was still waiting and hadn't had anything to eat, so he finally had to leave to get something to eat and returned with no appointment or orders ready.  After waiting until about 4:00 p.m., the doctor had finally signed the order, but there were no open appointments for a transfusion today, so they scheduled it for 7:00 a.m. tomorrow morning at Miami Valley Hospital. 

While I expected his numbers to drop some after the Vidaza chemotherapy, I wasn't expecting so much difficulty in arranging the transfusion.  So, I called his nurse coordinator, but she too was on vacation.  Instead, I got to talk to another nurse who was filling in for her.  I was concerned that since his next treatment appointment to draw blood work and get blood products wouldn't be until next Wednesday, December 31, 2014, (5 days) that he was going to need a transfusion before then (especially with his hemoglobin hoovering right above the threshold of 8.5, and because of the fatigue he has been experiencing the last two days).  She said that she could secure us an appointment in the Taussig Cancer Center at the Cleveland Clinic on Monday, December 29, but we would have to be there at 8:15 a.m.  Todd, although he was tired of the long wait today, he still wasn't ready to go back to Cleveland Monday.  We would have to go up the night before or leave that morning around 4:30 a.m. to get there! It was her opinion that if he got platelets today, (well, tomorrow now) he would likely be able to wait until Wednesday, but he would very likely need transfusions then.  In the worse case scenario, we would have to be prepared to take him to the emergency room if he becomes symptomatic of falling counts: such as extreme fatigue (where he really doesn't feel like getting out of bed), shortness of breath, and/or confusion.  These signs would indicate a severe need for a regular blood transfusion.  Of course, if he would start bleeding anywhere, he would have to go to the emergency room for a platelet transfusion. 

I hate the idea of taking him to an emergency room which takes so long, and with people who can be contagious and put Todd at risk of catching something.  At least at the Cancer Center at the Cleveland Clinic, everyone else there is in the same fragile situation as Todd and the patients and family members are educated about germ control and how important it is. 

With the stomach/intestinal virus and the influenza circulating, we are trying to be extra careful to protect Todd from catching these.  Please do not visit if you or any member of your household has been sick.  We still have to be very vigilant in protecting him from catching something that may seem minor to us, but detrimental for him.  Although he is excited to see a few new movies that have been released, I have talked him out of going at this busy time of the year with so many sicknesses circulating.  

Todd was quick to point out that his white count had actually gone up slightly from 1.54 on Monday, December 22 to 1.9 today.  This is likely from a positive response to the Vidaza chemotherapy.  Usually, the counts drop and then get a bounce up for a few weeks.  His ANCs (Absolute Neutrophils) of 1.4 were almost within the normal range of 1.5-7.8.  I love that he is so positive and looks for things to be grateful for!

This is a good opportunity to shameless plug blood donation and platelet donation.  Many may recall our experience with the platelet shortage right after his transplant.  This shortage still exists.  If you are healthy and able to donate, please contact your local blood donation center or the Red Cross.  Your donation can save lives and bring strength and help to Todd and others like him who rely on transfusions.  Please note: you CANNOT donate specifically for Todd only; this is too complicated, but it does help keep the blood products in supply. 

I  hoping to post some Christmas photos and a few other tidbits later this week.  Thanks for your support!  Please keep praying: that he would develop a mild case of Graft versus Host Disease to fight off his diseased bone marrow; that he would feel well and keep his energy level up; that the transfusion scheduled for tomorrow goes well and that he won't need to go to the emergency room for more transfusions until his next appointment; that our family would have peace and harmony; that if the timing is right, that God would open or close doors for a job opportunity for me.  I have an appointment to take a skills test for one job opening in January and I've put in an application at a local university who needs a library information specialist that I'm actually qualified for.  I still haven't made a decision whether to return to school or not either. 

My mantra today:  God can do the impossible!!!

Day +100: Christmas Day!

Merry Christmas!  Today is Day +100 post bone marrow transplant. With a successful transplant, the critical period would be over, the disease would be gone, and Todd's counts would be up in the normal range or very close to it. We would only be doing routine follow-up appointments. But this isn't what happened...God has another plan in store for Todd. So, our journey doesn't end here. We will continue fighting MDS longer.  

We are thankful to be home with family. We had dinner with Todd's mom on Tiuesday, December 23. On Christmas Eve we went to have dinner and a gift exchange with my family. Today, we were woke up starting at 7:15 a.m. by our teenage daughters!  (Some things never change!). 

Tomorrow morning Todd will have his blood work drawn here in Dayton to make sure he doesn't need any transfusions. If he does, we will need to go to Miami Valley Hospital or another hospital for whatever transfusion he needs. If nothing is needed, we will return to the Cleveland Clinic on Wednesday, December 31, 2014 for treatment and an appointment with his regular BMT doctor. 

May God Bless you!  We hope you had a Merry Christmas!  

Day +97: Cleveland Clinic Appointment Results December 22, 2014

Todd's treatment appointment started with the routine vitals and blood work.  His counts were down a bit more today, but this was expected after the week of chemotherapy.  His whites were at 1.54 (1,540); Hemoglobin 9.4; and Platelets down to 20,000.  These counts were strong enough to alleviate the need for any transfusions.

We ran into a friend and former transplant patient and her husband in the doctor's waiting area.  Today was her last appointment!  Her chimerism was struggling a bit, but her counts were much higher than Todd's.  Her bone marrow biopsy came back clean; no signs of disease!  This was such a praise!  I told her how hard to was to see other patients from the transplant floor reaching their 100 day mark and getting to end transplant follow-up treatments, when we are back to where Todd started before chemotherapy and the transplant.  She empathized and told me that although it may seem that the marker to ending treatment seems to keep getting pushed backed for us, we just need to concentrate on getting to the same end result: recovery and remission.  It might just take Todd longer to get there.  I found such wisdom in this!  We don't understand why God is taking Todd down a different path, but I'm sure he has a reason (His ways are higher than ours).

We saw a different doctor today, an associate of his regular BMT doctor, since she is on vacation.  Todd's nurse coordinator also joined us to give us the latest news from his doctor.  He examined Todd as usual looking for any sign of Graft versus Host Disease rash.  I asked if there is still a good chance that he can get GvHD and he said absolutely yes; with the mixed chimerism, there is still a chance.  This would be ideal!  If Todd's body could develop a bit of Graft versus Host Disease it would help attack and kill his diseased bone marrow and give his brother's donated marrow the upper hand.

They took him off his magnesium tablets, which is normal a few weeks after stopping the Tacrolimus.  The Tacrolimus causes low magnesium, therefore the added supplements.  So, without taking the Tacrolimus for several weeks, he shouldn't need it anymore.  He does still need to continue with the rest of his medication until further notice.

Todd's cytogenetic report was back from his bone marrow biopsy.  It did show one chromosomal abnormality: a deletion in chromosome 5 [46,xy,del(5)(q13)(17), xy(3)].  He had this same deletion, along with three others earlier in the year in April and May, but they had gone away with the four rounds of Vidaza before his bone marrow transplant.  So, this one deletion has come back.

I asked what the next step was going to be, and his nurse coordinator jumped in and said that his doctor would like to get a couple rounds of Vidaza in before doing the second stem cell transplant.  So, we know that he will start his next round January 12, 2015.  I'm not sure if there will be a third treatment in February or if they will go on to the stem cell transplant.  They will be looking for a decrease in his blast counts when they do a follow-up bone marrow biopsy.

I also asked if there was a mistake in his chemotherapy, the trial medications, or the immunosuppression regimen during and after the transplant that allowed him to relapse.  I explained that I had heard of other patients having their own marrow suppressed instead of the donor and that his doctor was going to do this for the next stem cell transplant, and he said that this was not standard protocol for an initial BMT. He reassured me that it is standard procedure to always suppress the donor marrow because without immunosuppression  there would most definitely be severe GvHD.  I also asked if having the chromosomal deletions prior to the transplant contributed to the relapse of his MDS, and he said there is no way to know the answer to that question.  He explained that Todd's current doctor is trying to learn the answers to this question with her clinical trial.  In his opinion, nothing done during the first transplant contributed to the relapse.

We don't need to go back to Cleveland for treatment on Friday, December 26, as long as we arrange to have his CBC blood work drawn here in Dayton, and follow-up with any needed transfusions at a local hospital.  Our next Clinic appointments will be for treatment and seeing his regular physician on Wednesday, December 31, 2014, where we will discuss his latest chimerism results, the plans for future treatment, and to schedule additional appointments. 

His 100th day is Christmas Day.  Although we won't be celebrating a cure or remission, we will be celebrating life! 

The "Todd Cade Care Fund" and the "Praying for Todd Cade" Facebook Page

Last week (Dec. 15-19, 2014), Todd finished up his first weekly treatment of the chemotherapy Vidaza in Dayton since the relapse of his MDS post-bone marrow transplant.  He did well, experiencing minor side effects of nausea and fatigue.  He had held most of the blood cells from his blood transfusion on Friday, December 12, 2014. 

We have received numerous checks, cash, and gift cards from friends and family the past two weeks which has been HUGE blessing to us!  However, others have asked how they can help from a distance or anonymously, so on Friday, December 19,  I went to PNC Bank with my parents to help set-up a bank account for people who wish to make donations to help us with our finances during this medical crisis.

Right now, anyone can make a donation in person at any PNC Bank Location or mail in their donation to the account:

TODD CADE CARE FUND. 

Please be assured that we will be good stewards of any gifts received.  Please know that these funds will not only be used for medical expenses, but also for living expenses such as mortgage payments, utilities, groceries, and the like.  Since Todd and I have both been unable to work, we have been limited to the modest monthly payment from Todd's private disability policy. 

Be assured too that we are doing everything possible to reduce our expenses.  Just this week, we sold one of our vehicles to provide funds and to decrease our insurance bill.  God be praised!

We have been approached by some of Todd's former classmates about holding a local fundraiser for him in February, 2015, but we are waiting for a date confirmation.  Details will follow.  A few others have also volunteered to set-up an online donation account such as "Fund My..." or a Paypal account, but this is still in the works and may not be up and running until after the holidays. 

We are humbled by your kindness and generosity.  It has been harder to be the "receivers" of such blessings than the givers. 

To extend the number of people we can reach with Todd's updates and news, our daughter Abby has created a Community FaceBook Page called:

PRAYING FOR TODD CADE

If you are on Facebook, please go to this page and "Like" it if you want to receive regular updates or quick posts via your news feed.  So far, he has 177 Likes!  Thanks for your interest and support. 

For those of you NOT on Facebook, don't despair.  I have every intention of maintaining this blog!  I'm so happy to hear people tell Todd or I that they follow the blog and are grateful for it.  Sometimes, I think it helps me more than just providing information to you, but I'm glad people follow it.  This past week, I have learned from many of those who have shared their experiences with battling cancer and this has been so encouraging!  Thank you for taking this journey with us. 

Day +91: Update from the Doctor.

Todd sent a message to his doctor about his appointment for next week and asked what about the plan after She is going to be out on vacation next week, so his appointment is with another transplant doctor on staff at the Cleveland Clinic. She wants him to come in for treatment and to see this doctor even though she won't be there.

She wants to run tests to see if he needs any transfusions, check his chimerism again, and check for any Graft versus Host Disease or Leukemia Effect. So this tells me that there may still be hope that Todd can see a reverse in his chimerism and/or that he can still develop some Graft versus Host to help battle his original bone marrow. 

She also needs these test results to help her determine the next step in treatment. She is still leaning towards doing a second bone marrow transplant using Todd's brother"s stem cells or just his T- cells. 

Overall, Todd has been feeling pretty well. He has been tired, resuming naps and has suffering some nausea even with the Aloxi they gave him the first day before chemo. He remains in good spirits despite the relapse, additional treatments, and our dwindling finances. We continue to trust God to supply all of our needs and he has been blessing us through friends and family and other charitable programs.  

We recently received an anonymous Christmas card with a $100 gas card and a $100 Meijer gift card from a good friend which will go towards groceries. My parents came over and made us dinner. They have been offering to help us in any way possible on a daily basis. Todd's mom also had our family over for dinner too!  Todd's brother and his wife sent us restaurant gift cards which makes it nice to go out to eat! We were also treated to lunch and good company by long-time friends who were happy to pay for lunch, recalling the time we had treated them to dinner after he had just lost his job!  We had forgotten all about it!

The Cleveland Clinic has been good to us  helping with COBRA premiums and providing us with a resourceful social worker. We learned that we are eligible for parking assistance with outpatient care. We are expecting assistance from the Leukemia & Lymphoma Society with medication co-pay reimbursements. Our social worker has also suggested a few other programs we may be eligible for since Todd is disabled. 

Please continue to pray for us. First that Todd will be healed. Pray for the doctors as they make critical decisions in how to continue treating Todd. Please pray that I can eventually go back to work or find a job when Todd's condition has stabilized.  We are trying to sell what we can and cutting monthly expenses where possible. I'm also trying to decide whether to continue graduate school, which would help me get a better paying job, but at a great cost. I only qualify for an unsubsidized loan at this point. I only have five classes left, with one being a practicum. 

We are taking life one day at a time. It's really hard to plan much further than a week in advance. But God is with us and we are still positive expecting the best!  

Days +90: Chemo going well

The first day, December 15, 2013,of chemotherapy (Vidaza) went off uneventful. Todd received treatment at our local cancer center in The Dayton area. Todd was even assigned his former nurse Dinah to resume his treatments. To show you how Todd has retained his sense of humor, he couldn't wait to tell Dinah that he has a Hickman catheter, because she often struggled to get the needle through his "thick skin."  

They ran a CBC before starting treatment and the results were encouraging. The showed a good bounce from the transfusion he received last Friday. We were glad to see he was able to hold the good stuff from the transfusion. His whites went from 1.28 to 2.0; hemoglobin from 8.1 to 10.5; and platelets from 22,000 to 27,000.  Sometimes patients receive transfusion, but have a hard time keeping the cells from them for various reasons. Todd had this problem in the hospital with his platelets. So, this is good news. 

 

I think the local oncologist draws a CBC every 3 or 5 days. It is common for counts to drop the first few days of chemo, but as the treatment begins to work, suppressing the growth of blast cells, counts go up. 

Day +87: Chemo scheduled in Dayton

We learned today that Todd will be able to do his outpatient chemotherapy with the local oncologist in Dayton starting Monday, December 15, 2014 for five days. This is great news. The only downside is that if his blood counts are low, he will have to go to a local hospital for transfusions. But, this is still better than spending the whole week in Cleveland. 

At today's treatment, Todd ended up needing a blood transfusion as his hemoglobin had dropped to 8.1. He has been very tired, so I hope this will help with his energy level. 

The other counts were down also. Whites were at 1.28 or 1,280. Low white counts can make him more Susceptible to infections. His platelets were high enough not need a transfusion, but they too continue to drop: 22,000. 

We are so grateful that we can be home next week. Driving up and back to Cleveland two times per week is getting tiresome. We have to get up at 5:00 am to get to his appointment on time. But still, this is better than staying in Cleveland all week. 

We have thought about what went wrong with the transplant: Why it didn't wor.k. Todd thinks they didn't give him enough chemotherapy to wipe out his bone marrow, but I think the problem lies in the use and application of the immunosuppressants. They chose to suppress his brother's donor marrow so he wouldn't get a bad case of Graft versus Host Disease, but I wonder why they didn't suppress Todd's bone marrow and let his donor marrow grow and engraft unsuppressed. I guess this was the professional decision of the doctor who is the specialist in this area. 

Whatever contributed to the failure of the transplant (we may never know), our eldest daughter in her wisdom told us: Don't regret the decision to do the transplant. It was the only curative treatment and we had to try it. The odds were in our favor. I have taken comfort in this truth. We can't change the past or second guess the decision to transplant. We can only move forward taking life day by day and make the best decisions based on where we are that day. 

Thanks for your support and prayers. We still believe God can perform a miracle in Todd. 

Day + 86: MDS is back after Transplant

We received the sad news today from Todd's doctor that the preliminary bone marrow biopsy showed that Todd's MDS has relapsed, finding 6% blast cells. The doctor has recommended that he start Chemotherapy on Monday, December 15. 2014. 

They will be giving him Vidaza, the same chemotherapy he had before going into the hospital for the transplant. He had good results with it then. Those four rounds were able to get him into remission before the transplant. So this is encouraging. 

It is easy to be frustrated when his condition is right back where it was in March 2014, except at that time  he had about 8% blast counts. It's disappointing to go through the entire transplant process, only to relapse before the crucial 100 days post-transplant period. 

We are trying to arrange to have the chemotherapy administered locally like before, but if they can't get him on the schedule on such short notice, we will have to do it at the Cleveland Clinic all of next week. 

What happens beyond this first round of chemotherapy is not known. The doctor is still planning a strategy. It is likely that he may still need a second transplant from his brother's stem cells if all goes well. 

Meanwhile, we are back at the Cleveland Clinic tomorrow for blood work and possible treatment. His blood counts dropped this past week close to the threshold of requiring  transfusions. His white count went as low as 1.45 or 1,450. His hemoglobin was as low as 8.7 and his platelets dropped to 23,000.  Transfusion thresholds: Blood is given at <8 Hemoglobin and platelets given at < 10,000. 

The last few days he has felt achy and nauseated. This could be because of his low blood counts and being off the immunosuppressants. His hip seems to be more sore and achy than any of the past twelve times he has had them done. 

We are trying to stay positive in light of this unfavorable news. Please continue to pray for healing and guidance for us and the doctor. While we still have confidence in her and the transplant team, we are not ruling out a second opinion. There are several treatment options that the doctor can recommend, so we pray that God will guide her choices. 

Day +84: Biopsy scheduled Today Dec. 9, 2014

On Sunday afternoon, December 7, 2014  Todd received a message from his online "My Chart" that the BMT Team finally scheduled his bone marrow biopsy for Tuesday, December 9. That meant we were going to have to be at the Cleveland four days this week!  This was too much since we have been trying to drive home in between appointments on Mondays and Fridays. This week, however they had scheduled his doctor's appointment on a Wednesday instead of a Monday with 3 treatment appointments Monday, Wednesday, and Friday. I think the schedule was changed due to his doctor's schedule. He hasn't needed a Wednesday appointment since the first week he was out of the hospital. 

Todd decided he wasn't going to go up for his Monday treatment appointment, so I called the doctor's office to rearrange this week's schedule. We decided to drive up on Tuesday for the biopsy and spend the night so we could be there early for his Wednesday treatment and doctor's appointment. 

We won't get the results of the bone marrow biopsy for about 4-7 days and then the cytogenetics will take a few more days longer. They are looking for a few specific things. 

First, that there is bone marrow from the engraftment. If there is no significant amount of engrafted marrow this would likely indicate a failure in the BMT. 

Second, they will look at the chimerism of the cells present: how many are from his own original bone marrow and how many are from his brother's donated marrow that has engrafted. 

Third, they will look to see if there is any disease present (MDS). They can determine this by looking for blast cells and/or the type of blast cells, and how many there are. 

It looks like they are going to do a CBC today and/or tomorrow to check his counts. 

We are expecting good news. We have been praying that God would bless us, and Todd's body specifically. We are praising God in advance for his wondrous mercy. Please continue to pray on his behalf. 

Day +80 Good end of a discouraging week

Monday's doctor appointment (December 1, 2014) and blood work left me discouraged. His white counts dropped to 2,440; hemoglobin dropped to 9.9; and platelets to 32,000. This news combined with last weeks' chimerism results left the doctor concerned too. She said they were going to schedule a bone biopsy, but as of this posting we have not heard from the scheduler. The doctor also discussed using a dose of steroids if his chimerism continues to show increased cells from the original bone marrow and dropping counts. She said this treatment is "somewhat controversial" but didn't say why. 

While the latest chimerism results were not back that day, Todd received a call on Tuesday from his nurse coordinator that his cells from his original bone marrow had increased to 60% which means his brother's donated cells were only at 40%. On Monday, the doctor told Todd to cut back on his Tacrolimus/immunosuppressant to every other day starting Wednesday. However, after the chimerism results were back the nurse instructed him to terminate the medication starting that day. It is the doctor's hope that removing the immunosuppressant will stop suppressing Todd's new bone marrow and allow it to take over and increase. 

Tuesday night I had hit an all time low. I was so concerned that these results were indicating a bone marrow transplant failure or a relapse in his disease within the 100 day critical period. But after pleading with God to turn things around I began to believe it would happen. By morning, Todd and I were both on the same page. We were going to expect the best to happen!! We decided to ASK God for healing and a change in his numbers, we agreed to BELIEVE it, even visualizing Tom's donated marrow engrafting in Todd and seeing it make healthy cells. Then we both decided to have FAITH that Todd was going to be healthy again; that God was going to answer our prayers. 

Every day since I have been enjoying living life with Todd to the fullest. I decided that I would do whatever it takes to get Todd the best care and treatment even if it meant going to another Hospital for a second opinion (if it comes to that).

We drove up to the Cleveland Clinic for treatment on Friday (December 5) praying for good news with his blood work. We were not disappointed! Not only were his blood counts stable but we saw a slight increase in all three cells. White counts were 2,700. Hemoglobin at 10.0 and platelets at 33,000. No transfusions were needed. 

We are going to stay positive and expect the best!  We continue to pray. 

This week the same word keeps coming up from the scripture:

Be of good courage. And he shall strengthen your heart, All you who hope in the Lord. Psalm 31:24