The Waiting game...

It's Wednesday, February 25, 2015, five days after receiving the preliminary bone marrow results. We sit in the hospital while Todd gets blood and platelet transfusions, with no new from the doctors at the Cleveland Clinic about what the next hurdle in treatment will be. I say hurdle because that best describes our journey right now. His disease continues to present new hurdles and we try to pace ourselves in between them, waiting for the right time between strides to make the leap to jump over the next challenge.

I understand that his BMT doctor is trying to make the best "informed" decision she can, which may include some waiting on further test results, but I can't help but feel sad, tired, and anxious as I watch my husband get sicker by the day. With every transfusion he receives, more iron builds up in his blood making it harder on his organs. Every day with neutropenia, low white counts and low ANCs he is at risk for infections and fevers. Every day with low platelets he risks bleeding and hemorrhages. While the doctors may be comfortable with the neutropenia and cytopenias, I am not.

Todd went to see his local oncologist yesterday and have his blood drawn. Even though I shouldn't expect higher blood counts, I still hold out the hope that they will be a little better than before.   Instead, I can't help but curse when they come back so low. For those of you who follow his counts, his hemoglobin was 7.6, whites at .300, ANCs at .2, and platelets at the threshold for transfusion at 10,000. 

I have spent the last few days in tears. I'm sad, frustrated, angry, and exhausted. Todd?  He's doing good!  He doesn't complain about his fatigue, nausea, or even that he has been inflicted with this disease. He's my inspiration!  

For those of you who have been asking about my job search, I don't have much of an update. I haven't even been subbing much lately. I've been so tired from just keeping up with the girls' schedule, homework, helping out with additional chores so Todd can rest more, and trying to be there to go to his appointments. It only took having Todd admitted to the hospital a few weeks ago, for reality to hit me. Getting a full time job right now probably is not the best idea. I go through periods of really wanting to get a job to help with our finances one the one hand but on the other, I realize that I wouldn't be there to help him if I was working full time. Someone would have to go with him to Cleveland and his appointments, but I want to be there to do that. I know his history and can help him more as his wife. 

If the right job opportunity came up, I would likely take it, but I haven't even had any calls from the applications and resumes that I have already put out there. I'm convinced that it is going to take someone helping me by word of mouth about a job opportunity, before I'm going to find something. I'm even thinking about applying for secretarial jobs for now. 

I'm at the point in my master's program where I need to fulfill my practicum requirement. Some of these practicums offer a stipend or hourly pay. So, I plan on trying to apply for one starting in the summer or fall. Unfortunately, there aren't many places offering them in the area. I may have to approach someplace locally or find a paying practicum that will require me to travel to.

It is really hard to plan anything too far in advance, not knowing how Todd will be or what his treatment will be. When? Where? Home or Cleveland? The same goes with selling the house. I finish my semester March 22. After that I'm hoping to begin working on getting it ready to sell. So, for a few of you who offered to help me clean out and box up, be ready for me to call. 

Other financial updates, a The Cleveland Clinic Foundation has once again generously agreed to help with our insurance premiums for two more months. But I'm afraid we've about exhausted their help. Our pastor has called, on behalf of our church, offering some help with utility bills. Several of my mom's friends have generously donated to the Todd Cade Care Fund at PNC bank. And we have someone who blesses us with a gas card almost every month. We are so grateful and flooded with joy at the unexpected and loving gifts from friends, family, and anonymous "angels." I didn't get to share the tears of joy I cried, when I found out that someone helped sponsor Ellie in paying the rest of her volleyball fees, on top of the generous advertisers that helped us.  We didn't have to pay anything out of pocket! This sponsor choose to remain anonymous, but if they are reading this post, please accept our deepest thanks and we pray God will bless you for the joy you gave us!  

We continue to do our best to be good stewards of every gift. For those who would like to help in other ways we do have a few needs. First, if someone could recommend a family counselor who is willing to take Anthem insurance, we would like to schedule some counseling. Throughout this entire journey, we haven't had the opportunity to get family counseling. This kind of thing would usually be offered to families for free at a Cancer Center that offers social services, but there are none in the Dayton area. The closest center to us is in Cincinnati. Of course, in Cleveland there are several locations of The Gathering Place where patients and family members can receive various services for free.

In addition, I could use a deep tissue message on my shoulders to help relieve stress and keep my sinuses clear. If anyone knows a message therapist who is willing to give me a discount under the circumstances, I would be grateful. Just by sharing this post, it may reach someone willing to help. This is another service that would be free to patients and family members at a cancer social services center, because insurance won't pay for it.

We could also use some help getting some repairs made to our house. We need someone that does a good job on fixing drywall, nail pops, and painting. Todd started a project laying pavers over our back patio concrete that needs finished when the weather gets better. I can't imagine him doing any physical labor anytime in the near future. So, you can help with any of these things starting in March, that would be a blessing. 

I'm going to close this post for now. I would like to leave you with the words and lyrics of Jeremy Camp's song He Knows. In an effort not to violate copyright laws, here is the link:
 https://www.youtube.com/watch?v=OsccUg4TDd8

God bless 

Bone marrow biopsy and results

Todd and I went to the Cleveland Clinic on Wednesday, February 18, 2015 for treatment, a bone marrow biopsy, and to see his BMT doctor. We left Dayton around 5:45 am driving through thick snow and slick roads. 

His counts were in the pits, needing another blood transfusion, less than a week since his last one. His hemoglobin was at 7.3; white count was .300 and his ANCS were too low to count. His platelets were hanging in there at 29,000. 

The bone marrow biopsy went fine, but it took hours to get the blood he needed from the blood bank. Apparently, there was an emergency in the ER in which a lot of blood was needed. So all non-life threatening requests had to be stayed. He didn't get to start his first unit of blood until after 4:00 pm. 

Meanwhile, the doctor had to come down to his treatment room for his appointment. There wasn't a lot to discuss until the bone marrow biopsy results were back. We discussed possible scenarios for treatments speculating with what the results could be. We were told to expect her to call with preliminary results by Friday evening, but not to expect a definite treatment regimen until she had a chance to confer with the other BMT doctors at their Monday conference session. 

We got home after 10 pm. Exhausted from the long day. The weather was so bad school had been cancelled back home for our daughters that day. It was cancelled for Thursday too, due to the extremely low temperatures. Our daughter, Abby, at the University of Cincinnati came home to visit since her classes had also been cancelled all week. 

Friday morning we mustered all of our energy and headed to Savannah, GA for a college visit for our daughter Hannah. 

We got the call from his BMT doctor while on the road about 5:30 pm. She told us the preliminary results showed that the chemotherapy Vidaza treatments were able to get his blast counts down from 7% after the transplant to 3% now. We were pleased to hear that even though his counts weren't lower (>1-2%), that they could still proceed with further treatment, most likely a second stem-cell transplant. The possibility of just doing the Donor Lymphocyte Infusion (DLI)  of white T cells would likely not be an option. Instead his doctor is leaning towards the second transplant using some chemotherapy to suppress his original diseased bone marrow, so his brother's additional cells can gain the upper hand. 

She also brought up the trial study option  we talked about earlier, the drug AG 221.  She said that the Cleveland Clinic has been in the process of getting registered to do the study, and that they were hoping to have it available soon enough to treat Todd there. So, needless to say, I'm going to do some more research about this study. 

Overall, I was encouraged by this news and I can't wait to hear the other results of the biopsy as they come in. They are checking his genetics again for the trial criteria, his cytogenetics, and chimerism. I'm anxious to hear her final recommendations too. I'm assuming that if they do the transplant, that it will happen in the next 2-4 weeks. 

Todd reacted to the news differently. The day we were at the hospital and his doctor brought up the trial study, he said it bothered him to hear talk of enrolling him in a trial.  He feels trials are for patients with no other options. Today, his first reaction was to express a desire to do another round of Vidaza. But, I explained that I had read that the sooner a patient has a second stem cell treatment after relapse, the more success they have.  So, I really feel like time is of the essence here. His doctor, I think feels that Vidaza has done what it was meant to do, but that for now they need to proceed to the next treatment. 

I reassured Todd that there are a few options left. The second transplant, another medication Revlimid if he continues to have just the 5q deletion, and the trial. Although the trial sounds scary, many patients have been fortunate to be cured or put into remission by having the advantage of being in one. 

I asked about whether the multiple transfusion would interfere with his treatment options and her answer was no. That most MDS patients need transfusions like this. Todd had just been fortunate enough to not need them early on. The only detriment of the many transfusions is that Todd will accumulate iron in his blood that maybe over heathy limits. I asked about using chelation therapy to remove the excessive iron but she said that most doctors have found that it doesn't help and that at the Cleveland Clinic they don't even monitor his iron levels. It is a concern, because excessive iron can build up over time causing damage to vital organs. I guess, in the BMT doctor's mind though, this is a lesser priority than trying to get rid of the Cancer and/or staying out of danger from the detriments of low blood counts. 

There is so much more to write but I'm already behind in getting this posted. I will try to post again soon about the trial drug, our current financial situation, and other concerns. 

Thanks for your continued support. 

 

Tired of low Counts and Transfusions

I made sure to go with Todd today to get his chemo. He was scheduled for blood work today to see if he needed any transfusions. The Cancer center has been so busy this week, there were few open chairs for patients and their caregivers. 

Todd's hemoglobin came back at 7.6, under the 8.0 threshold requiring transfusion. We were also warned that his whites were at .300 and ANCs were at .100; both so terribly low. Of course, he received his chemo today anyway. Just one more day to go. A friend from the transplant floor called to check on Todd yesterday and she said she had treatment with Vidaza in the past with similar low numbers and she did fine. She did stress how important it is to get to the hospital in a timely manner though if a fever develops. His nurse also cautioned him about the neutropenic guidelines, which we have already been following. It is comforting to know that he is on antibiotics and antivirals just in case. 

After waiting for about 15 minutes for a scheduler to set up a transfusion appointment at the hospital, I decided that was long enough. We were NOT going to sit around for hours waiting for orders or for the transfusion to get scheduled. Our nurse was so busy; I knew I had to be proactive. 

I went out and explained the situation to one of the schedulers. She started checking on where his "Stat" transfusion orders were at. Within minutes she was on the phone with Miami Valley Hospital getting him in. I was so thankful!  She knew all the protocol to follow, who to call, and had our appointment set up in about 10 minutes!

We grabbed something quick to eat knowing we would be at the hospital for hours. We arrived at Miami Valley Hospital in Dayton and they got him into a chair in the Advanced Treatment Area and we began the long drawn out process of getting blood. This includes the patient History, vitals, signing waivers, getting a type and screen, waiting on the blood to be sent down, giving him pre-meds (Tylenol), having two nurses verify the blood and patient, and finally starting the first unit slowly for the first 15 minutes to make sure he doesn't have any reaction to the blood. This takes about an hour and a half or more. 

If there is no reaction, they increase the speed of the infusion. Each unit takes about 1 1/2 hours to run and he usually always gets 2 units. And of course it takes time in between to get the second unit sent down, verified, vitals collected, and get it started slowly. Today getting two units of blood took over 5 hours, which is pretty typical. 

It is nice getting treatments at the Cleveland Clinic because Todd could get everything in one location, instead of here in Dayton he has to go to the Cancer center for his chemo and then to the hospital for the transfusion. While they are more protective of their patients at Cleveland Clinic than at Miami Valley, I didn't miss the nearly 4 hour drive back home like we have to do when we go to Cleveland. 

With Todd's ANCs and white counts so low, I didn't like him being in a room with just curtains separating him from people they were bringing in pneumonia or others who are hacking and coughing loudly. I think this was because the advanced treatment area is also the express admission unit. 

All that aside, I'm so grateful to be home in our house, in our own bed, with our children in Dayton receiving treatment for Todd right now. We will be back in Cleveland soon enough. 

Todd fell into bed and rested after getting  home. He ate a little bit and relaxed with the girls. I was concerned that he has seemed a bit down in addition to being so worn down physically the last few days. So, I am appealing to those of you who care enough to read this blog to pick up the phone and give him a call this weekend. He knows you have been faithfully praying for him, but I think he would enjoy hearing from you too. May God bless you!  

3rd Round of Chemo starts with Neutropenia

It's been almost a week since I've had the chance to update the blog!

APPOINTMENT WITH LOCAL ONCOLOGIST: 

Todd's Thursday, February 5, 2015 appointment with the local oncologist went well. His doctor hadn't left for his trip to climb Mt Kilimanjaro yet (leaves on Sat). Todd's counts were stable and no transfusions were needed. His hemoglobin went to 9.1 and his platelets to 29,000 which was good, but his Whites and ANCs were still low. 

We talked about whether to proceed with the Vidaza on Monday or not. The Dr. said that his BMT doctor in Cleveland is the quarterback calling the shots, which in her opinion is treating if ANCs at .500 or greater. The local oncologist said he wasn't quite comfortable with that and likes the ANCs to be around 1.0 but has proceeded with counts of .7 or .8 in special circumstances. 

Todd had a good day on Friday. Saturday we got up early and took our daughter to her second college visit in Columbus, OH. While the campus we toured was compact, there will still a good amount of walking and stairs to climb.  It was  a long day. Even though he was wiped out, he was glad he got to go.

On Sunday, I made him stay home to rest while I took our youngest daughter to a volleyball tournament. These things are crazy!  They are fun to watch, but they are all-day!  We left at 7 am and got home at 8:30 pm!  It's loud with screaming, cheering, and whistles from about 8 courts blowing at every point!  You're in one building with about 300 people, so it's not an ideal place for him to be. I was happy he trusted my advice as his caretaker to stay home and rest up for his chemo treatment the next morning. 

Needless to say, I was exhausted and I'm healthy!  So Todd went to his chemo appointment alone so I could sleep-in.

 FIRST DAY OF CHEMOTHERAPY: MONDAY, FEBRUARY 9, 2015

His first chemotherapy appointment routinely starts with a CBC to check blood counts before starting the chemo. For some reason (Todd said they weren't busy), his regular nurse at the local Cancer center DID NOT wait for the results and started treatment anyway. Todd didn't stop her. Once the treatment was already running, the results came back with his ANCs at .300!  Todd told her then that he wasn't supposed to get the chemo with his ANCs below .500, but she said there was nothing in his file that stipulated that. I would think she would have known better! She should have waited and asked the doctor on call or something before treating!!! (And the doctor wonders why we prefer treatment at the Cleveland Clinic).

I was so upset and concerned when he got home and told me what happened. He was upset but not for the same reasons: he felt like what choice did he have?  He could not get the chemo and then risk the disease growing stronger and jeopardizing the second transplant or he could get the chemo and maybe get an infection or neutropenic fever.

I think this has been the most devastating part of battling MDS. You have so few options available, and most are just the best they know of or have. That is why the research trials are so important. There are a few treatments they know that work, even in trials, but nothing is long-term. Oh, how we need to pray for a new cure!  The only "curative" long-term treatment is the bone marrow transplant and we have learned, there is no guarantee that it will work. 

I stay in touch with several patients and families we met on the transplant floor while Todd was at the Cleveland Clinic.  Very few are doing well.  One friend who had MDS and stopped responding to Vidaza, had her transplant but has had complications with her chimerism too.  It was going in the right direction at first (her brother's donor cells were increasing), but then it started to reverse (her cells were increasing while the donor cells were decreasing).  Her two bone marrow biopsies post-transplant have confirmed that no disease is present (PTL!), however, they still needed to boost the number of donor cells.  She had a perfect match donor in her brother and also had no Graft versus Leukemia Effect after transplant.  She had to go in last week and have a new port put in her chest, and then received a mini-Donor Lymphocyte Infusion  (DLI) from additionally harvested stem cells from her brother.  No immosuppressions are given, so she is at risk of developing a serious case of Graft versus Host Disease (GvHD).   They are waiting for two weeks or more to see what happens.  If there is no severe GvHD, then they will give her another mini-DLI from additional stem cells they froze.  This process may have to happen several times.

Another friend contacted Todd this week to say he was back on the Transplant Floor with a case of RSV (Respiratory Syncytial Virus), which I have heard of in babies and the elderly.  And another friend has called for the last two weeks with updates about her husband.  His first biopsy was clean and his chimerism was at 98%  everything was going great, even though he had not experienced any GvL Effect from his unrelated perfect matched donor.   Then he got Cytomegalovirus (CMV), which immune-compromised people are highly susceptible to and his numbers dropped.  They treated him with strong antibiotics and it went away, but they couldn't get his counts to stay high enough to avoid weekly transfusions.  He was there for transfusions and a second biopsy to see if his Acute Myeloid Leukemia had returned.  He passed out and they got him in a wheel chair but soon after, half of his face started to droop and he couldn't remember the month or date.  They sent him to the emergency room, fearing he had had a stroke, but they found out that he had a Intracranial hemorrhage instead likely caused because of his persistent low platelets.  They had to take him to surgery immediately to drain the blood and relieve the pressure from his brain.  He was admitted with a drainage tube for several days afterwards getting platelets transfused every day.  While he was there, they took samples from his peripheral blood to see if his disease was back and found blasts cells there at 10%.  They started him on Vidaza the next week and I think he has gotten to go home for now!  

I had heard that there could be internal bleeding from severely low platelets, but I didn't know anything about Intracranial hemorrhages.  I did a little research and learned that this is not uncommon with patients with hematological  diseases, especially ones that cause low platelets (>10,000 or >20,000).  According to research, it is the second most common complication after infection. (Chen, 2012, background).

As you can tell, its not just Todd that is struggling post-transplant.  

Back to the appointment:

I put a call into his BMT Doctor in Cleveland this afternoon, and she confirmed that they are more aggressive at the Cleveland Clinic and she would have told them to proceed with the Vidaza had she been there anyway.  She did advise that Todd start taking his Cipro antibiotic right away, watch what he eats observing a neutropenic diet  (See http://www.lls.org/diseaseinformation/managingyourcancer/treatmentnextsteps/foodnutrition/neutropenicdiet/) within reason, and for him to try to be content staying at home, or at least limit being around crowds because there is so much still going around right now that he can catch.

The good news was his hemoglobin was 9.0 and his platelets were at 81,000. It looks like he received a boost from the transfusions and maybe a bounce from the second round of Vidaza.  At least these higher counts may help him have some energy and keep any serious threat from low platelets at a minimum for now. 

We are back to taking his temperature twice per day, watching for any signs of infections or neutropenic fever.  The doctor reiterated the need to go to the emergency room with any fever over 100.4.

So, please pray he gets through this week without too much fatigue, without a fever, and without any infections.   

Read more:

Chen, Chien-Yuan, Tai, Chan-Hwei, Cheng, Aristine, Wu, Hung-Chang, Tsay, Woei, Liu, Jia-Hau, Chen, Pey-Ying, ... Tien, Hwei-Fang. (2012). Intracranial hemorrhage in adult patients with hematological malignancies. (BioMed Central Ltd.) BioMed Central Ltd. Retrieved from: http://www.pubfacts.com/fulltext/22931433/Intracranial%20hemorrhage%20in%20adult%20patients%20with%20hematological%20malignancies.

Todd admitted to Miami Valley Hospital February 2&3, 2015

So, much has happened, I finally had to close out my last blog without including everything!  I tried to work on that post for the past two days, but just didn't have the energy to finish it.

Todd's counts have come up some, but he still needed a unit of blood this morning, Tuesday, February 3, 2015.  His whites went up from .9 on Monday to 1.1; his platelets went from 21,000 down to 13,000 yesterday and then up a bit today to 14,000; his hemoglobin went from 6.7 after arriving to 7.6 after his transfusions yesterday.  His hemoglobin was still at 7.6 this morning, so they are currently giving him 1 unit of blood.  From what I can tell, his ANCs were at .6 and have risen to .8 then to .9 today.  So, he is above neutropenia level (<500).

He learned from the physician making rounds, that his blood cultures came back negative for infections.  So, the reason for the fever was likely just a neutropenic fever.  (See http://www.uptodate.com/contents/treatment-of-neutropenic-fever-syndromes-in-adults-with-hematologic-malignancies-and-hematopoietic-cell-transplant-recipients-high-risk-patients?source=see_link)

I put in a call to his BMT doctor in Cleveland yesterday, just to let her know what was going on.  She called me back about 4:00 p.m. to discuss the situation.  First, she said Todd was welcome to come back to the Cleveland Clinic if we weren't happy with Miami Valley.  She thought Todd passed out probably because of the low blood pressure more so than the low hemoglobin, but it could have been both.  When I asked if she was still planning on having him start his 3rd round of Vidaza on Monday, she said yes.  As long as his ANCs are above .500 she was still wanting to proceed.  I told her I was concerned about his counts dipping even lower after resuming treatment.  She said, it would still be acceptable as long as they could be managed by transfusions, even if he has to get them often.  She has decided to though to move up the bone marrow biopsy to a week after this next round of Vidaza.  Nothing was said about doing a 4th round.

What was the most interesting information was that she has continued to check into the idea of enrolling Todd in that study for the new medication called AG-221 by Dr. Eytan M. Stein at Memorial Sloan-Kettering Cancer Center.  http://www.mskcc.org/cancer-care/trial/13-154   (see Post:  http://toddsmds.blogspot.com/2015/01/recommendation-stay-course-with.html).  She researched Todd's medical records and found that Todd does have the gene deletion that is required to enroll in the study.  In addition, there are no disqualifications for patients who have had a bone marrow transplant.  As long as they have been off their treatment regimen (chemotherapy) for at least 14 days, they can participate.  While the gene testing was done early on with Todd's initial diagnosis for clinic studies with his oncologist at the Cleveland Clinic, the test can be repeated "officially" for the record.  She said that the Cleveland Clinic has not been approved at this phase of the testing to conduct the trial, but she said the closest location that is offering the trial is in Chicago, which isn't too far.  While she's not ready to pursue this avenue right now, she likes the idea of having this option "in our back pocket" just in case.  I thought this was encouraging news.  I like that she listened and was open to researching my suggestion.

No appointments have been scheduled for Cleveland Clinic yet.  She's waiting to see how this week and next week goes.  But according to what she said, we will be heading back to Cleveland for a treatment appointment, bone marrow biopsy, and consultation with her around the last week of February.

Well, it is almost 2:30 pm and Todd just got his discharge papers.  He is changing clothes and we are getting ready to go home!  He has to follow-up with his local oncologist, or rather the physician's assistant (because his local oncologist is on vacation climbing Mt. Kilimanjaro) on Thursday morning at 9:30 a.m. at their office at Miami Valley South.  I hope it goes smoothly and that they don't give him a hard time there about collecting his CBC.

His third round of Vidaza is still scheduled starting next Monday, February 9, 2015.  They will do a CBC before starting.  So, between these two appointments, they should be able to stay on top of his counts to see if he needs any transfusions.  I think Todd has learned the hard way how important this is.  He said if he would have gone in on Friday or even Sunday morning to get his blood work and transfusions done, he wouldn't have had to spend the last two days in the hospital. 

Todd takes a Trip to the ER on Super Bowl Sunday

Sunday, February 1, 2015, Todd woke up with a roaring headache. I feared his blood counts were low and I urged him to let me take him in the get a CBC done and any necessary transfusions. He was stubborn and refused to go. He said he was getting a CBC the next morning and he could wait. I shouldn't have listened...

He stayed in the bed or sitting up in a chair the entire day. He took 2 Oxycodone tablets for the headache but he said they really didn't help. 

I was busy doing homework after taking out youngest daughter to volleyball photos. I came in with my laptop and sit with him a while, until it was time for my online class meeting. I worked on assignments after that til after 10:30 pm. He was ready for me to flush his catheter lumens a little after 11:00 pm. While flushing his lines I made him take his temperature. I noticed he had a folded up cold washcloth near his bed he was using as a headache compress. I got very concerned then. Sure enough he had a fever of 101.3. We both looked at each other and decided to take it again. This time it was 101.4. 

I grabbed my phone and had his local oncologist paged. I rushed around and started packing bags for both of us. I knew the protocol: any fever over 101 means a trip to the ER. After 25 minutes went by with no call back from the doctor, I had him paged a second time. This time the got him on the line while I waited. I explained the situation. He asked me what his counts were last Monday. And then he said to head out to the ER at Miami Valley Hospital and have the Fellow on call, Dr "C" paged so that Todd could be admitted. 

The girls helped me finish packing and we drove out. We arrived about 1:00 am and they took us back to a room after getting his vitals.  

They started the routine tests looking for infection: urinalysis, blood cultures, and a CBC  to get blood counts. They gave him some Tylenol to lower his fever and started him on IV fluids, and an IV drop of antibiotics.   They closed off his room and hung signs that anyone entering needed to wear a gown and mask.  Even me and my dad, who came out for a few hours, had to wear masks.

When it came time to do the chest X-rays, he didn't do so well. The doctor really wanted him to go have the X-rays done in the lab instead of having a portable X-ray machine brought to his room. Apparently, they can get better X-rays if he stands. So they wheeled him down to X-ray, but he ended up passing out and falling during the X-rays. They got him back onto the bed and back to his room in the ER. They took his blood pressure which was the lowest I had ever seen it: 101/48. He was broke out in a cold sweat, with beads of sweat all over. He was exhausted and started to fall asleep, which would cause his oxygen saturation to drop so they put him on oxygen. The ER doctor had a hard time getting the Fellow on Call, Dr. "C" to come in.  So, he had to ask me questions and then call Todd's local oncologist.  This was a bit frustrating. 

His blood counts were low: Hemoglobin 6.3; whites .7; and platelets around 13,000. His ANCs were about .5 making him neutropenic. This spoke volumes. Needless to say, Todd will be preemptive in the future to not let his counts go too low without having them checked in a timely manor. 

They did a type and screen for his transfusion and we made our way to his room on the Bone Marrow Transplant unit on the 5th floor about 4:00 am. I have to pause here and tell you the overwhelming sense of dread that came over me as they wheeled Todd up to his room.  Just the smell of the sterile environment and feel of the halls brought back memories of long days and nights at the Cleveland Clinic.  The Blood and Marrow unit at Miami Valley is so small in comparison.  This unit probably only has 10 rooms or less.  They don't do any allogeneic transplants here, just autogolious. However, the same hand washing and sanitation protocols are in place. 

They had to change his dressing and caps on his Hickman Catheter.  He had sweated through his shirt and even his catheter dressing (bandage) .  They started his blood, which came up as O+ instead of his typical B+  They had to use a universal blood type because that was all they had available.  The nurse said they throw away B type blood, because they don't use it that much.  It took all night to get the 2 units of blood.  They had the drip on slow for the first 15 minutes to make sure he didn't have a reaction to it, but they were supposed to turn it up after that.  I'm not sure they ever did.

At first they put an alarm on his bed, since he was now classified as a "Fall risk."   But, after some time, they turned it off.  He couldn't get up to go to the bathroom, so they had to give him a urinal by his to measure to his output.  It was the longest night.  I tried to fall asleep in the recliner chair next to his bed.  They brought me some heated towels which helped, but I don't think I slept more than an hour or so.  I had to set my alarm at 6:45, 7:00, and 7:15 to call home and make sure the girls got up for school.  I was so tired that I texted Hannah some kind of cryptic Emjois of faces and monkeys and misspelled words!  Freaked her out a bit I think.  I had the nurse get me a cup of coffee around 8:30 am and tried to rouse myself awake.  We had an appointment that day to meet with the Social Security Administrator at the Xenia office at 11:30, which Todd was adamant I keep.  The appointment was made months ago and it was to sign me and the girls up to receive benefits as part of Todd's Social Security Disability.

I drove home and cleaned up and made it to the appointment on time.  I got everything filed.  Even though they don't want to pay Todd the maximum he is due (because someone in Columbus, OH figures these percentage out!), we are signed up and should receive our first benefit payments on April 8, 2015.  That's still 2 months away!  It is days like this that reminds me how stupid it is for me to look for full-time job.  We still are living day-to-day without knowing what the next day, next week, or even next month holds.  I was supposed to teach 3 days this week, but had to cancel those days with everything going on.  I am also going to be restricted to how much money I can make and still receive Todd's social security benefits.  So, this needs to be taken into consideration too. 

Let me thank everyone who his still sending us anonymous gas cards and making deposits into the Todd Cade Care Fund.  Our church, Hillside Chapel has also stepped up this past month and helped us with some of our expenses.  God is good. 

I took a nap and then went back to the hospital early in the evening.  My parents brought me and the girls some food and then I went back to the hospital early in the evening.  Our oldest daughter Abby had to come back into town, so she picked up Hannah and Ellie and brought them out to the hospital.  After a good visit, I drove home with Hannah and Ellie and Abby headed back to UC.  It was one long continuous day!