January 2016 Begins Month 11 of Trial Drug AG221

It is hard to believe that as of this Wednesday, Todd will begin his 11th month on trial drug AG221. I was reading a news update on the drug (link here:  http://www.nasdaq.com/press-release/agios-announces-data-from-ongoing-phase-12-trial-of-ag221-showing-durable-responses-in-patients-20151206-00039 ).  It looks like they are continuing with additional trials this year for MDS patients in addition to AML patients.  It looks like Todd is not the only one seeing some improvement. When you read the article Todd is one of the MDS patients having a response to the drug. 

As we read the article, we were able to reflect on where he was a year ago! He was so weak and transfusion dependent. I was frustrated with the current rounds of chemotherapy (Vidaza). It is amazing that we know so much more about AG221 now than we did last year!  

I'm so grateful to Dr Etyan Stein for his work on getting this trial information in the news and Agios for putting his presentation online where I was able to watch it and encourage Todd to go on it and fly to New York to see Dr. Stein at Sloan-Memorial Hospital in New York City. 

Todd's last appointment in December went well. His blood counts and his MDS are holding steady. For those of you who are interested in CBC counts for comparison: White: 4.02; Hemoglobin: 10.9; ANCS: 3.42; and Platelets: 51,000.  His Bilirubin remains higher than normal, but still within the study limits. We did get his last bone marrow biopsy results back and they showed a 1% increase, resulting in a 3% total blast count. We aren't upset about this because this is essentially not enough of an increase to make a difference. They always have to allow for a small percentage of error or for slight variations as counts and bone marrow samples differ. The good news was that his cytogenetic report from that biopsy did not show any additional chromosomal abnormalities. 

Early in December, I did have a candid conversation with his Bone Marrow Transplant Doctor about the new research about the TP53 genetic mutation.  This mutation is acquired and is usually what causes the cancer or disease.  There has been some studies trying to determine whether patients with this TP53 mutation, don't respond well to transplants or are more resistant to therapy.  She discussed how the TET2 mutation also is being studied in relation to patients who end up with a "poor prognosis" or at higher risk.  I had learned about the TP53 mutation after reading a friend's blog about her son with Leukemia, who had relapsed after a bone marrow transplant, who is now relying on an alternative trial treatment that using T-cells.  (Craun, November 2015). And, when reading the last issue of the MDS newsletter, there was an article about TP53 and its connection to a patient's prognosis who has this mutation. (MDS News, Fall 2015). I asked Todd's doctor if Todd had this mutation, and she knew the answer immediately: Yes, he did.  If this research proves true, it would answer the nagging question of why Todd's bone marrow transplant failed.  It would also be helpful in the decision to have a second transplant someday; if the evidence shows this mutation inhibits a successful transplant, we would likely eliminate that option in the future.

I'm so thankful that he has not suffered any of the severe adverse events or reactions to the drug. Even though he has suffered terrible nausea and high liver function counts, it has been tolerable. 

I'm a bit disappointed that he has to have another bone marrow biopsy AGAIN this visit. The other tests are less invasive and they don't bother him as much. Hopefully, after he has been on the trial drug for 12 months, they will lessen the frequency of biopsies, although I have no assurance of this.  We were assured though that at after 12 months, his trial study appointments at the Cleveland Clinic would change in frequency from every two weeks to only once a month!  This will be great!

We said goodbye to Ashley, his primary trial nurse, who is leaving the program to take a nursing job back on the Leukemia floor.  We will miss her, as she was there for us from the beginning and whenever we needed answers.  We are confident that we will be in good hands with her replacement, Sam, who has been on the trial study team from the beginning too. 

So, Todd will have a full run of tests this Wednesday, as he plugs along on AG221.  We are curious to see how our new insurance, through the Affordable Care Act, works for us this year. The main focus now is to get him through Winter without getting sick.  We haven't done much socially, and fear vacation travel at this point, but it would be nice to get away for a little bit over spring break. 

 A few concerns and prayer requests:

First, like I stated in the last post in December, we received paperwork from the Social Security Disability Board asking for detailed information in their review of his continued approval for benefits, which is beyond comprehension to me!  I filled out about 10 pages of appointments, treatments, hospitalizations, transfusions, medications, etc. only to receive a second request form (8 pages) last week asking us to describe his daily functions in detail!  I can't imagine how anyone could look at these papers and not determine his continued need.  His health is so precarious, dependent on stable blood counts and staying completely healthy.  We learned how quickly he health could change in October 2015 when he was hospitalized for a cold and pneumonia for 13 days!  As this is our only source of income right now, we are desperate that it continues.  I don't understand how he was a productive citizen and paid the maximum into the system for years, and then we he needs it, they have to challenge it! 

Second, speaking of income, I still haven't found a full time job.  I graduated with my MLIS in December 2015, only to be let down by what little value these credentials are in obtaining a position.  I apply weekly for jobs, and try to do something productive everyday in the job search.  I have several applications pending at UD right now, but everything else I have applied for has not produced any offers.  I am also actively seeking volunteer experience and trying to schedule to attend several professional organizational meetings, but these have also been in limbo.  If you know of anyone who is hiring, even outside the field, please let me know!  I have applied for positions outside of field, and one of those applications is still pending.  It is not always what you know but rather who you know that helps land that job!

We took the house off the market for the holidays, as we needed a break from showing it and our listing had been on the market too long for serious offers.  We will likely put it back on the market in early March. 

We appreciate all those who have sent Christmas cards, money, and gift cards, especially Beau Townsend Ford's Employee Christmas Club Fund and that of our friends and neighbors. 

Right now, we are just trying to appreciate Todd's stability and giving God the praise for the blessings we have daily! 


References:

Craun, Gina. November 24, 2015). Windshield Wipers. Cainan Craun. Caring Bridge. Blog.  Retrieved from: http://www.caringbridge.org/visit/cainancraun/journal/view/id/56549676a589b45a417219e8

Prognostic Impact of TP53 Mutations. MDS News, Fall 2015,Vol. 21, Issue 2. page 11.  Retrieved from: http://mds-foundation.org/wp-content/uploads/manual/2015fallnewsletter.pdf

Todd Hospitalized: Days 5-6

Day 5 Hospitalized: Sunday, October 18, 2015
Counts: Whites: 2.0; Hemoglobin:7.8 ; Platelets: 59,000 ANCS: 1.9;
Liver: Total Bilirubin:  7.4; Alkaline Phosphastase: 218; AST: 74;ALT: 102; Indirect Bilirubin: 4.4

Fever still persists. Had a better day yesterday, because they decided to stay on top of his fever with round-the-clock Tylenol every four hours. It just takes so long to work!  I didn't come into the hospital until the afternoon, since Ellie had a lacrosse tournament that I wanted to take her to.  My sister and boyfriend went out instead that morning and my parents in the afternoon.  They were concerned, because the nurse tried to give him the large potassium tablets to swallow, which immediately made him gag and throw-up.  My dad was upset, and suggested the nurse dissolve the tablet in water first and have him swallow it instead.  This worked much better.

It became obvious that he wouldn't be out of the hospital anytime soon. This is what his doctor in Cleveland feared: a long stay and she can't consult on his care.  Todd became frustrated and nervous about his care at this point and told me he had already initiated a transfer request to the Cleveland Clinic that morning.  At first, they told him they were going to move him at 1:00 p.m.  He wanted me to call the insurance company to make sure they would cover the cost of the transfer, but I had no luck getting a hold of anyone on a Sunday.  The nurse said, that the social worker probably got it approved already or else they wouldn't have arranged it.  Obviously, we were concerned, knowing that it was something we couldn't afford out-of-pocket.

So, I knew I needed to get home and get packed, but then they rescheduled to 9:00 p.m. that night.  But by mid-afternoon that transport got cancelled too!  Apparently, no ambulance carrier service was available.  Todd said it was because everyone wanted to stay home and watch football!  I said, I should start my own ambulance transport company! So, they rescheduled his transfer to11 am on Monday morning.  We weren't very happy with this, and once again I tried to go on the Anthem BC/BS website (which is horrible!  No search button!)  to find out if we had benefits.  If he didn't have benefits, we considered having him discharged from the hospital so I could drive him up myself.  Cleveland Clinic had a bed for him, and after that day's transfer fell through, they agreed to hold the bed for him until the next day.

When I made in it, I was shocked to see how yellow he looked!  It was obvious that his bilirubin was high!  He also had bags under his eyes, near his cheekbones. The round-the-clock Tylenol they gave him the day before helped the fever, but not his liver!

We learned that all prior blood cultures and a MRSA swab that turned in before came back negative, which was really no surprise.  I didn't understand, and had been advocating for them to take an influenza swab since I first took him to the ER.  The doctors there wasn't concerned, feeling that if he had the flu, it was too late to treat, but I wanted to know if he had it or not!

Hannah Lewis came out with me to the hospital, being home from college for a few days.   His fevver was still up and down, and he didn't feel very good, but it was a football day, so that helped some!

Also, big news of the day, was that he was advised NOT TO TAKE HIS TRIAL DRUG AG-221, because his bilirubin was borderline of staying in the highest tolerable level of 7.5.  It was the first time in the 7 months he has been on the drug that he had to miss a dose.

I didn't leave the hospital until about 11:30 p.m.  And even though I tried to get to bed right away, I couldn't help but start packing, and talking with the kids.  It was extremely late when I got to bed.

Day 6 Hospitalized: Monday, October 19, 2015
Counts: Whites: 1.32; Hemoglobin: 6.8 ; Platelets: 42,000  ANCS: ?;   
Liver: Total Bilirubin:  7.3; Alkaline Phosphastase: 189; AST: 37; ALT: 66; Indirect Bilirubin:?

Monday started early, making a call to Todd's nurse, taking Ellie to school, confirming the arrangements to have the hot water heater installed, and calling the insurance company right at 8:00 a.m. when they opened to verify coverage.  The representative said that they would cover the transfer under certain circumstances like when they were moving him to an upgraded/better facility, but they usually like per-certification.  Todd's nurse called me around 8:30 a.m. and told me that the ambulance was on the way and that they were transporting him at 9:00 a.m. now.

I called the trial nurse to find out if he should take his AG-221 at 9:00 a.m. before Todd left Miami Valley.  Once, I told them his bilirubin number of 7.3, we agreed that he should likely hold off again.  Technically, he has until 3:00 p.m. every day to get his dose in.  So, I told him not to take it and check again with the staff when he got to his room at the Cleveland Clinic.

 I was dragging, but got a second wind when Abby brought me breakfast, and it was time to send Hannah Lewis back to Columbus with folded, clean laundry! Lol!  Abby helped me packed, reflecting on how she helped me pack for Cleveland last year for Todd's transplant.  After a shower, and my preferred caffeine from McDonalds, I was ready to hit the road.

We both made it up to the Cleveland Clinic with no problems:Todd by ambulance around 1:30 pm since they picked him up early at 9:00 am and I arrived about around 4:00 pm.  I was glad they were able to secure him a room on the Leukemia Floor, Room. G111-12. I immediately noticed his cheeks were rosy with fever as soon as I walked into the room and insisted that they take his temperature again. It was over 101 degrees F. All the standard tests were started: new blood cultures, CBC, and urinalysis were all drawn. I thought I would dread being back here, but I was glad they had a room for him.  It was an upsetting first day as he looked and felt so poorly still.

Todd did not end up taking his trial drug AG221 for the second time in 7 months. The did give him more potassium again today, but the nurse dissolved it in a little bit of his Canada Dry Ginger Ale, then had him drink it.  This worked well.  By the evening though, they thought it was just easier to give it to him by IV drip.

High temperatures continued to be an issue. They didn't give him a blood transfusion when he needed it, because they were concerned that they would not be able to tell if he was having a reaction to the blood (which is usually depicted by a new fever). So, they kept him ice packed, and gave him 1 tablet of Tylenol. He was feeling so poorly, I practically begged them to give him the transfusion, but the doctor wanted to continue to wait while his fever was lower (around 100) with the ice and the 1 Tylenol. He continues to have headaches with the low blood counts.  

They finally swabbed him to test for influenza.  Unfortunately, until the test comes back negative, everyone will have to take special precautions coming into the room, needing to put on plastic gowns, gloves, and face masks (except me of course!).  Not only did they want to know if the flu was a factor in Todd's illness, but it is important not to spread it to other compromised patients on the floor.  No one doing it at Miami Valley Hospital from the beginning was a huge mistake and oversight on their part.

They are NOT in favor of doing ANY KIND of BRONCHOSCOPY!  Since they can't do the biopsy because his platelets are so low, it will do no good to do the scope and try to get some liquid out, like they were going to do at Miami Valley.  It is not helpful, and does not warrant the risks of the procedure. 
 

10:00 p.m.
With his fever, and low hemoglobin, his respiration and difficulty breathing began to increase. When the STNA came in at 10:15 p.m to take his vitals, they noticed that his oxygen level had dropped from 98 to 85-88 (they don't want it lower than 92). The nurse called the doctor and they put him on oxygen. His fever dropped to 99, so they finally agreed that he needed the hemoglobin and gave him one unit of blood.

 
He slept a lot, as he was so weak. I helped him brush his teeth in bed with a spit tray.  He was seeing things, which we found out later, that the Voriconazole can cause hallucinations and visions.  He went to bed fairly early, but got up about 1:30 am to go to the bathroom.  We were able to sleep pretty well through the vitals and blood draw about 4:30 a.m. until they came back in again about 8:00 a.m. Tuesday morning.

Personal notes:
I'm sure I'm missing some things and some of the times and what happened on which day may be jumbled.  It has been nearly impossible to go back and recall the events of the last six days!  The days, treatments, fevers, and medications, have been an endless stream.  I wish I hadn't gotten so behind in blogging, but I have spent an enormous amount of time on the phone coordinating his care and checking on things between two hospitals, multiple sets of doctors, and staff.  I've been trying to communicate with the kids, parents, friends, and family, all who are concerned about Todd.  I have been trying to post short updates on his Facebook Webpage every day too.  If you are interested in getting faster updates than the blog, please go onto Facebook and search Praying for Todd Cade.  If you "like" the page, it will show up on your newsfeed.

Todd is concerned about all the extra expenses that have come up, especially the high cost of the water heater and installation.  We are hoping that the ambulance ride was covered too.  I told him not to worry, that I would start a GoFundMe page if worse came to worse, or ask for donations to the Todd Cade Care Fund at PNC Bank.  I know its hard on him being laid up in bed and worried about caring for everything.

The House has been listed with the realtor and we may have someone coming to look at it this weekend.  We are doing what we can.

I haven't got to blog about us losing our health insurance in January 2016, but basically, we were denied the 11 month extension of COBRA benefits for qualified members on disability.  We didn't know it wasn't automatic and no one told us that we were supposed to notify Todd's employer or his insurer (still don't understand which) within 60 days of being notified of his Social Security Disability Eligibility Date, which would have been last year, right after he got out of the hospital from the transplant.  Everyone involved from his employer to the COBRA administrator swears that their hands are tied and that they have no control over the extension.  Didn't get a clear answer who denied the claim, but I guess it doesn't matter.  All the begging or pleading has not helped us.  Even the Department of Labor was no help.  It looks like we will be one of those families forced onto Obama Care/Affordable Care Act, that is really not affordable!  I can't imagine paying any kind of percentage of expenses.  I pray we can avoid bankruptcy if we have to pay 10%, 20% or more of Todd's health care costs.

At this stage, we can only take one day at a time! I only write about this COBRA thing to warn anyone else who is on COBRA benefits and who may also need the 11 month extension.  If you are awarded Social Security Disability, please be sure to notify your previous employer, the insurance provider, and anyone else you can think to notify within 60 days after your award date!    I wish someone would have told us.  If we could have been awarded the extension, it would have taken Todd to the eligibility date for Medicare at the 2 year mark from the SSD award date.  I wish we had someone had told us!

We appreciate your concern and support and covet your prayers.

Financial downturn: Major side effect of Cancer

One in five American adults will struggle to pay medical bills this year. A sudden accident or frightening diagnosis can touch virtually anyone, unleashing mountains of bills even on the insured. In fact, medical bills are the leading cause of personal bankruptcy, a last resort after millions of families have drained their savings, maxed their credit cards and even refinanced their homes.  - Christina LaMontagne. 2014

Someone recently told me that "Cancer can financially suck the life out of you."  I never thought that would be us, but I'm finding it to be true.  If you are like us, we are not used to being on the asking or the receiving end of the situation. Seeking assistance can have an unfortunate stigma attached to it, but that is why there are programs, organizations, and people who are able to help in a time of crisis.

Loss of Income
First, you have to deal with lack of income.  When Todd began out-patient chemotherapy every 21 days back in April 23, 2014, he left work and went on disability.  This disability was a private insurance policy that he had paid for years while employed.  At first his private disability insurer deemed this as temporary, short-term disability, with a monthly payment at a minimal rate.  During this time, we had the assurances from his employer that we could maintain our family health insurance policy at his normal employee rate.  After 12 weeks, Todd's private insurance policy moved him to a long-term disability status, which meant his disability payment went up by about $500 per month.  I worked as a substitute teacher until almost the end of the school year, the third week of May, 2014.  Of course, there was no work for me during the summer since school was out.  I  haven't been able to work during this school year yet because I left to go to Cleveland with Todd on September 7 and I'll be here through the 100+ days his transplant requires.  We have had to rely on the private disability payments and savings to get us through.

Social Security Disability
I have to admit, I was pretty ignorant about applying for social security disability.  Todd paid the maximum amount into Social Security for years while he worked, but the first time he applied for benefits, he was denied.  We appealed the decision and the request was finally approved, but not retroactive to the original filing date (April 2014), but as of the date he entered the hospital for the transplant (September 2014).  The private disability insurance company was insistent that if the Social Security Disability was approved retroactively, we would have to pay back every penny of benefits he received from them, because there is a rule about not receiving both at the same time.  (We didn't have to do this after all since Social Security did not make it retroactive).   Regardless of when you get approved, you have to wait a mandatory five months before you can get your first monthly payment.  So, that means we will have to wait until March 2015 before we can receive any help.  As frustrating and embarrassing as this may seem, if you have paid into the system and are qualified for benefits, it is a benefit you cannot do without.  Just be prepared for the five month waiting period with no payments! 

Medical Expenses and Insurance Premiums
Second, you have to cope with increased medical expenses. Although we had the assurance of his employer that our health insurance premium would stay the same, things changed unknowingly.  Without any notice, we were "accidentally" cancelled from all of our health insurance on July 31, 2014, unbeknownst to us.  Todd went in for a daily chemotherapy treatment and was turned away because of no insurance. (See blog post http://toddsmds.blogspot.com/2014/08/treatment-halted-due-to-insurance.html)  He did not get to finish that 7-day round of chemotherapy at all.

After sorting it out with his employer, we had to sign a Right to Elect COBRA Continuation Coverage Form asking us to say that Todd had voluntarily terminated his employment and that he now had to go on a COBRA policy (Note: He did sign it, but he wrote that he left due to going onto disability).  Apparently, his employer justified this action saying that Todd was taking leave under the The Family Medical Care Act and not because he was disabled, which doesn't make any sense because No Family Medical Leave was requested by Todd,  nor did any of the appropriate paperwork get filed).  See: https://www.tasconline.com/biz-resource-center/plans/family-medical-leave-act/
We signed and agreed that our insurance premium would only go up from $585.86 to $597.82 which equates his normal employee rate plus a 2% processing fee.  We were surprised by this amount, and asked his employer to verify this, because we were under the impression that COBRA payments should be higher.  But they confirmed it. 

After making two months of payments at this rate, we noticed that our third monthly payment did not cover the new balance of $1,195.64 per month  Once again, we were not told or notified by his employer that our rate had doubled because we were supposed to pay both the employee premium and the employer's share.  When making inquiries, we learned that his employer had a made a mistake and didn't charge us enough those two months.  Instead, they had to "eat" those two months of their half, because they incorrectly charged us.  By law, apparently, they are not allowed to over-bill us to recoup their payments.  At this point, we had no choice to continue our health insurance policy.  Todd was post-transplant and still needed to be in the hospital for several more weeks needing the post-care treatment.  Our children still needed coverage back at home.

After discussing financial issues with other transplant patients in the hospital, we learned of some grants and programs that may be available to us by several leukemia and cancer organizations.  So, we contacted our social worker at the Cleveland Clinic to start the paperwork.  I'll share these organizations later in the blog, but back to the insurance premium story for now.  By October, 2014, while Todd was still in the hospital, we had learned through the another source that our premiums had now been raised to $1,480.66!  We later received a letter from my husband's employer stating that due to the open enrollment period premiums had been raised for the upcoming year to $656.43 per month per employee, and since we were on COBRA, we would have to pay both the employee and employer portion which made the amount $1,312.86 effective November 1, 2014.  This explained some of the increase, but not the $167.80 difference.  After talking to the COBRA administrator, we asked if the employer had raised it to try to re-coup their lost portions from the prior months, and he said they were not allowed to do this, but he would call the employer to confirm the amount.  In the meantime, we called the insurance agent for the employer and learned that since his employer's policy offered the Health Savings account option, which allows for out-of-pocket deductible reimbursement, our policy total was now $1,510.27 per month ($1,480.66 plus 2% processing fee).  In essence, our health  insurance premiums had almost tripled in three months!

So, we experienced the 1-2 punch!  First, lack of income, then triple insurance premiums.   Thank God that the insurance we had was great insurance.  We had already met our deductible by the time the chemotherapy and the transplant procedure began, so we fortunately did not have huge hospital bills like some of the other patients we met.  We did have some co-pays on some of the more expensive drugs/medications Todd needed post-transplant, but they are manageable since we've met our deductible for the year.  Next year, may be a different story.  Starting January, our deductible ($6,000 per person/$8,000 per family) will start over and that is on top of the $1,510.27 monthly premiums.

And we are fortunate.  Most families end up in bankruptcy with medical bills after such procedures.  After talking with some of the other patients we met in the hospital, some received bills of $700,000. just for the transplant day alone!  Total bills for the entire procedure were near $1,500,000.00.

Now the good news and agencies that you can check into:

What help is available: Grants, reimbursements, organizations:
"Be The Match" Patient Services offers various grants depending on the patient's specific circumstances: whether the donor is related or unrelated, whether the transplant is autologous or allogeneic, and whether the transplant takes place at an approved transplant center or not.  Autologous transplants are not eligible.  Unrelated donor transplants are eligible if the donor was found through the National Marrow Donor Program.  Related donor transplants are eligible. There is a criteria that has to be met including a statement of income and expenses.  We contacted our assigned social worker at the Cleveland Clinic who gave us an application for the Hendrick Marrow Program Grant for transplants using related donors.  Contact a social worker at the hospital in which your transplant will take place at for assistance in getting the grant application processed.  For more information visit their website: www.bethematch.org/patient.  This grant is usually a one-time payment/award.

A second source of assistance is through the Leukemia & Lymphoma Society and their co-pay assistance program.  This program can provide assistance to qualified applicants in paying their treatment co-payments, insurance premiums, and medication co-payments.  Go online to www.LLS.org/copay or call 1-877-557-2672.  I will warn you that most of the application process for this program is online.  There will be some verification that will need to be processed, like proof of diagnosis from your doctor, but they handle this directly.  You do have to provide a copy of your insurance card, citizenship/residency proof, and proof of income.  This nice thing about this program is that the award given is usually available for your co-payment claims for a year from treatment.

Another source, believe it or not is the hospital!  First of all, many large hospitals or cancer treatment centers have their own charitable foundations that can assist those in need of financial assistance.  Second, these same hospitals may be able to assist you with your insurance premiums during chemotherapy, transplants, and post-transplant treatments because it is beneficial to them for you to maintain your health insurance.  They can collect more money from an insurance company for these large ticket item procedures than from a person with no health insurance.  And, as a last resort, many people fail to realize that you can negotiate with the billing department of the hospital on final bills.  Many times they are willing to settle for an amount they can collect, than for collecting nothing at all. Options include establishing monthly payment plans and/or negotiating a lump-sum settlement amount. 

Don't forget to exhaust all available national and local sources.  A social worker is your best advocate in this situation.  Even the American Cancer Society can be of some help.  For example, discounted hotel rooms for caregivers and cancer patients are free for a few days and thereafter rates can be reduced to $12 per day.  While I have heard some negative stories about some of the facilities, it may not be the case everywhere.  In the Cleveland area, The American Cancer Society has agreements with some of the Extended Stay Hotels with this type of arrangements. The Marriott Towne Suites we are staying in is subsidized with significantly reduced rates and offer extras such as free shuttle service to the hospital and/or free parking passes for the Cleveland Clinic parking garages which can save up to $100 per month.

I have talked about the Hope Lodge in prior posts, and would like to mention it here.  It too is an excellent resource for transplant and cancer patients and families going through treatment.  The Hope Lodge here in Cleveland provides FREE lodging for the patient and an adult caregiver going through treatment at the Cleveland Clinic.  There is often a waiting list, so you need to have your social worker help get you on the list.  They provide a private room, freezer and refrigerator space, community space with TVs and computers, and a community kitchen for all the patients and caregivers to use.  In addition, various groups (church, fraternities and sororities from Case Western Reserve) come in at least once a week and cook meals for those staying there.

While we were tempted to seek out a second opinion and have the transplant procedure at the Ohio State Center so we could be closer to home, we are glad we stayed with the Cleveland Clinic.  Not only for their great doctors, nurses, staff, and awesome social workers, but for their facilities that allow for visitation from friends and family due to the state-of-the art filtration system and because they are an approved transplant center that has the financial ability to help with subsidies.

Local sources include Cancer Support groups, your church family, friends, and neighbors. A fellow transplant patient was fortunate enough to have meals brought in from church families, and their neighborhood even organized a golf scramble with all the proceeds benefiting the family!  Don't forget to contact your local chapter of the American Cancer Society or American way to see what help they can provide.

Here in Cleveland they have an organization called Touched by Cancer that provides two locations called The Gathering Place, where cancer patients and families can go for counseling, exercise programs, art classes, nutrition classes, music therapy, meditation and relaxation therapy, and other activities at no cost.  http://www.touchedbycancer.org/

I'm sure there are more organizations you can find online or just by making connections with other cancer patients. 

 "How are we doing now?"  
Well, without going into personal details, we are making serious changes.  We are cutting our monthly expenses.  I am looking for a full-time job with benefits so we can get rid of the high cost insurance we have after Todd's treatment period is over.  We are looking into The Affordable Care Act (Obamacare) which is something I never thought we would have to do.  Unfortunately, we are finding that the policy we would qualify for or need would still cost us about $1,000. per month!   I will go back to substitute teaching until I can find something better. Todd's ability to go back to work at this point is not known.  Sometimes it can take up to 18 months for a transplant patients to get their energy level back to normal.  Beginning in March 2015, Todd will finally get his first Social Security Disability payment which will be a huge help.  We've talked about selling our home and downsizing in the Spring to something smaller or renting a home or apartment in Beavercreek so our youngest daughter can continue to go to school there.  Whatever happens, or however discouraging things may seem, we don't want to lose sight of the precious gifts of life and love we are blessed with.  We are trusting in our Great God!


References:
LaMontagne, Christina. March 26, 2014.  Web.  Retrieved from: http://www.nerdwallet.com/blog/health/2014/03/26/medical-bankruptcy/