Merry Christmas and a Wonderful End to 2010!

It's been a year since Eric was diagnosed, and it truly is amazing thinking of where we are now compared to a year ago. Though we haven't posted in a long time, we are doing great! Eric continues to get his blood checked once a month, with good results. Life is slowly getting back to normal.

You can't help but think back on this past year and smile. We've witnessed miracles and what one person can do through shear will power and determination. Eric came home in March with the help of crutches, and was able to dance with me at my brother's wedding in May. We built a fence this summer and traveled to see friends and family (yes, there was even a bachelor party in there). Thanks to the Campbells, we've been able to attend several Purdue Basketball games. Now, we're heading into the holiday season ready to celebrate and enjoy being with the people we love.

We had the opportunity last weekend to visit the nurses of the ICU. It is always nice to see their faces as we walk in. It continues to amaze me how much they care day in and day out for the sickest people. It always feels good to show them how much of a difference they make. We were also able to speak with another family that was there, and our thoughts and prayers go out to them during this time.

May everyone have a merry Christmas and a 2011 filled with joy and happiness. Thank you for all of your love and support, and the impact you have had on our family.

Love,
Melissa

Next Round of Chemo

I saw Dr. Cripe today and got lined up for my last session of chemo. This session will last for the next 18months. It will consist of 4 pills of Mercaptopurine (200mg total) daily, 13 pills of Methotrexate (32.5mg total)every Friday, and 10 pills of ATRA (500 mg total) for two weeks every three months.

The first two are new drugs to me. I'll be taking the Methotrexate on Fridays since people sometimes get sick the day afterwards. I'm going to ramp up on the ATRA over a couple of days so that, hopefully, I won't feel bad each time I take it.

First Week of Work

Sorry, forgot to post this weekend.

The first week of work went well. I did half days so I was home around lunch time. I'm excited to be back at work but the plan is to take it slow. I met with the facility doctor today and we decided to keep me on half days until at least July 15. I see my oncologist on Thursday and will hopefully start up my next round of chemo after the 4th.

Going back to work!

I saw my rheumatologist shortly after the last update. She said that she wanted me to stop the Alieve and try to switch to a gel form of the same medicine. I would be able to get the same medication but apply it directly to the joints instead of getting it into my blood stream. I stopped taking the Alieve and was going to give it a week before starting the gel. I made it exactly a week before going back to the Alieve pills. In addition to my hands and feet - my back, neck, knees and elbows started hurting and I had some trouble sleeping.

My supervisor and I spoke last week and we concluded that I should get my sleep schedule back in order before starting back to work. We set June 21 for my first day back, which will be soft until later this week when I will hopefully confirm that I am ready for Monday. The Alieve has gotten back into my system and I've been sleeping through the night again but my schedule is messed up. I'm back to falling asleep sometime around 2am. My goal for the week is to get back to waking up in time to go to work as soon as possible.

I went into CAT today and spoke with the nurses and doctor at the facility. They updated my medical file and signed me off to start on Monday. After all of the trouble I've had with paperwork and approvals, going back to work is easily the simplest thing I've done in the last couple months.


Eric

5/27 - 6/3

Things have been progressing nicely in the last week.

Since last Thursday I have been discharged from PT, told I didn't need to get my blood checked anymore, golfed 9 holes, played volleyball, and went swimming.

I saw my physical therapist on Thursday. He evaluated my balance and concluded that he wouldn't need to see me anymore unless I decided I needed to work on something. He's going to keep my file open for another 6 weeks but will close it out then unless I contact him.

As Melissa said last week, we got my Thursday blood results on Friday. My hemotologist thinks that my blood counts are showing a recovery and that I don't need to get my blood drawn twice a week. I'll just get it drawn once a month when I go back down to Indy for checkups.

Saturday morning, I drove up to Granger, IN to hang out with a bunch of friends. We typically would go to the Indy 500 but they made a good call and thought it would be better if we watched it from the comfort of air conditioning. On Saturday, we played 9 holes in the heat. First hole I hauled off and nailed my tee shot. I got all of it but when we got to it, I only hit it about 220 yards. It was a bit of a wakeup, I was trying to hit long irons all afternoon where I would typically hit a wedge or 9 iron. After we finished up, I had some trouble cooling down. I drank a bunch of ice water and took a cold shower but eventually just spending some time in the AC helped.

On Sunday, we met up with some more friends for the race. I'm sure it was far more enjoyable inside with the lights off drinking beer than out in the stands drinking water because friends at the race were calling saying how they were melting. After dinner, we went out and played some volleyball. This was my first time really trying to jump and move around quickly. I feel on my back nearly every time I jumped, it wasn't very graceful. After a few games, I went and jumped in the pool to cool down and relax a bit. That was short lived once the game of Marco Polo started. That was a lot of fun but a bit more challenging than when I was young and had hearing in both ears. Thanks to Tim for the help though, instead of saying "polo", he just splashed water at me.

After all of the excitement on Sunday, I nearly slept until noon. I woke up just in time for lunch and then hustled back down to Lafayette for a Memorial Day cookout that Melissa was putting on....that I forgot about.

I promise it won't be so long before my next update.

Eric

No More Weekly Blood Labs!

Hi Everyone,

I just heard back from Eric's nurse that his counts are rebounding nicely. His white blood cell count is 2000, Hemaglobin is 11.1, platelets are 228,000 and his neutrophils are 1100! For all purposes, they consider him recovered from his last round of chemo, and don't require him to get his blood drawn twice a week.

Happy Memorial Day to all!
Melissa

Blood Counts

Melissa and I made a trip up to the Chicago area last weekend and got to see a lot of the family. I'm feeling much stronger now but my energy is started to decrease again. On Saturday, I pushed myself too hard (as a lot of you saw) but it was nothing a quick trip to the ER couldn't solve. They checked me out and found that my blood counts had dropped significantly since I got them checked on Thursday. They're not quite as low as they were last time but they've dropped more quickly, although I started lower. Blood tests yesterday showed similar results. I'm not neutropenic but my white blood cells are low so I'm back to brushing my teeth 4 times a day with prescription mouth wash and using hand sanitizer all the time. I'm supposed to stay away from sick people and crowds which is going to be tricky this week because we're heading down to St. Louis for Melissa's brother's wedding.

I've also been talking to a few rheumatologists. When I was receiving my last round of chemo, they spent some time looking at me and thought that when I was sedated and wasn't' moving, my tendons may have attached to different parts of the bones in my hands causing them to lose range of motion. They assured me that the pain isn't hurting them so they said that I just need to break the connections. They said that if I do something and it hurts, keep doing it. If this doesn't work, a potential next step is to go in and snip the tendons where they are attached in the wrong places.

After this, another rheumatologist in Lafayette concluded that I may have gout since my uric acid levels are borderline too high. Our family doctor, however, says that since I'm on the larger side, higher uric acid levels are too be expected. She thinks that it is right in the normal range for someone my size and doesn't conclude I have gout.

Each doctor we see has a logical opinion but none of them seem to agree what is causing the pain. They do all agree that the pain won't cause further damage though.

Eric

Quick Update

Hi Everyone,

It's been a week since our last post, and Eric is home and doing well. He says that he's feeling the effects of the chemo more than last time, but he has not had the severe headaches he had last time. So, I'm wondering if that has something to do with him noticing fatigue and just generally not feeling right a bit more. We've had his blood checked once since he left the hospital last week, and all of this counts look fine. They are low from the chemo, but not too low for comfort - the doctor's comfort, not Eric's. :) Like I said, he's noticing he can't do as much as he could a week ago. The good news is that this should be the last time he gets the IV chemo. They'll let him recover from this round, then give him a month off before starting the pill chemo. He'll be taking that till December of next year. Well, that's about it for now. I'll let Eric give a longer post when he feels up to it.

Love,
Melissa

Kidneys

The doctors just left after making their morning rounds. They said that my creatinine levels have rebounded to better than when I was healthy. They have rebounded so quickly that they've determined that it must have been an error with the lab work.

They also are going to have another rheumatologist here at the hospital come and check me out for my joint pain.

First Dose of Chemo - Round 3

Melissa drove me down to Indy yesterday and we got checked in. I had my first round of chemo around 5pm and had some headaches and a little dizziness afterwards. They started me back up on the cocktail of headache and nausea medicines that we had settled on last time I was in and they seem to have mostly gone away.

We got to speak with the neurology team for a while just before Melissa left. We talked about everything from my joint pain and nerve pain to headaches and blurry vision. Dr. Snook is going to ask a few other doctors about my symptoms but about all we were able to conclude is that the pain in my feet and hands are opposite symptoms. The foot pain could be due to the tendons on the bottom of my feet being contracted and having trouble stretching out, causing a higher arch. It's anyone's guess why I can't make a fist but they suspect tendons also. Dr. Snook also wanted me to get checked out by the vision clinic here at the hospital to map my field of vision to see if I'm having blind spots.

The rest of the doctors came around this morning for their rounds. They said that since I started taking Alieve a week ago for my joint pain, my kidney function has decreased a bit so we're going to stop with those pills. Apparently to measure kidney function, they measure the amount of creatinine being held in my system which isn't being secreted and disposed of. Before I started on the Alieve, I was at a normal level right around 1.00. After a week, my creatinine level has risen to 1.65. They told me that you really only need 25% kidney function to be considered healthy and that this change is likely due to the Alieve and very likely reversible. They plan to keep an eye on this while I'm here though so I'll update as they update me.

Eric

More Chemo

Melissa got a call on Friday saying that my blood counts have rebounded so that I can do my last round of IV chemo this week. Also, the PCR test came back negative for leukemia. They send this test out once a month, and everything has looked great! Melissa is driving me down tomorrow morning. It sounds like I'll be going through the exact same routine as last round, except I won't be undergoing a spinal tap. The doctors think I'm out of the woods for the cancer to have spread there, so there is no reason to do that test/chemo again. I believe the only other change will be starting me out on a lower dose of the ATRA (the drug that gave me headaches last time). They're going to try building me up slowly to the full dose, to help prevent the headaches. After this round of chemo, they'll start me an oral chemo in conjunction with the ATRA every 3 months for two years from the onset of the leukemia. This oral chemo is not as strong as the IV form, so it's a step in the right direction!

Quite a bit has happened since I last posted. I mowed the lawn for the first time this year (much to Melissa's relief!). This went pretty well, excluding the mower trying to tip on the hills and the resulting 3 days of R&R I needed after this. By Friday, I was bored of the couch, so I went to the driving range to test out my swing. I was completely out of breathe after hitting a small bucket of balls and my muscles made me pay for the rest of the weekend. Muscles hurt that I never knew I had. I think I'm going to try going to the driving range a couple times each week after I recover from this next round. My 8 iron has lost ~45yds so I have some makeup to do before I'm ready to try playing again.

Melissa and I spent this weekend up in the Chicago area. We got to see Melissa's cousin and her family, my grandma, and the Jennings and entire Yoder crew. The kids are 4 and 3, and FULL of energy. The 4 year old just started playing soccer. Watching a 4 year old's soccer game is pretty entertaining, since they basically have no concept of inbounds and out-of-bounds, nor which goal is really theirs. :) We had a great time with the Jennings and Yoders. You really can't go wrong with nice people, great food and drinks, and a hot tub. As I've told a few of you, I've been watching a lot of Travel Channel and Food Network while at home during the day. It seems like there are dozens of shows on Chicago area food, so we did our best to get around as much as possible. We ate plenty of Italian beef, brats, burgers, and then mint juleps for the Kentucky Derby. All in all, we had a pretty fun, tiring weekend.

Eric

Weekend in Peoria

Melissa and I took a trip back to Peoria for the weekend. I drove Friday night which pushed the limits of what my back could take.

Saturday morning, Mom, Melissa and I went for a 2 mile bike ride. We then went out for lunch and then Dad, Melissa, Jon Jennings (a friend from school) and I went on into the Peoria Beerfest. It was a lot of fun, lots of good beer and music. After a few hours of standing and drinking, we went on home and ended up heading to one of my favorite steakhouses in Peoria for dinner. It was a long day and I ended up going to bed about 4 hours earlier than I usually do.

Early this morning I started paying the price. I was up from about midnight until 4am when I decided to take some pain killers and was able to sleep again. We did church this morning and then Melissa drove the rainy trip back to Lafayette.

In all, it was a good weekend, we didn't get to see some of the people we had wanted to but finding my limits now and then is a good thing.

Tomorrow, Melissa and I will head down to Indy to see Dr. Cripe. My blood counts still aren't high enough to check me in for more chemo but we'd still like to talk with him in person as he is going to be out of the office for a few more weeks when I'll likely be continuing my treatment.

Eric

Next Chemo Delayed

I just heard from the nurse at the hematology department that Eric's blood counts have not rebounded enough for him to get another round of chemo on Monday (4-26). (The earlier reporting of his bone marrow rebounding was a fluke.) His hemoglobin and platelet counts look good (10.9 and 190,000, respectively), so they think that his bone marrow is working OK. However, his white blood count was only 1500, and his neutrophils were 700. They require the neutrophils to be higher than 1500 before they will give another dose of chemo, so they are pushing back his next hospital stay. The nurse said that no one is really concerned because his hemoglobin and platelets are rebounding, and that they see this pretty often. He is at day 23 of this chemo treatment, and they said it could take up to 30 days for the bone marrow to fully recover.

Otherwise, Eric seems to be feeling pretty good! He's been pushing himself quite a bit this last week. We were able to go to the Indianapolis Symphony on Friday night (Dvorak's New World Symphony!!), and he did several house projects with my dad. He was pretty exhausted after all of that, but you could tell that he really enjoyed getting out and doing some of that stuff again.

He was also able to get some more X-rays and blood work done for some pain he has been having in his joints. We've been mentioning this to the doctors as we see them, but nobody has really given us an answer other than, "Let's see what happens", though they seem to think it is because of withdrawal from the anti-inflammatory steroids. Our family doctor finally ordered this lab work to be done to rule some things out (like arthritis). It'll be nice to get some firm answers, even if it is only a negative test result.

Until next time,
Melissa

Driving

Look out folks, I'm driving again.

After rehab today, I drove the Jetta to get my blood checked and then back home. I had been holding off driving until now because I was concerned about being able to move my feet fast enough to get on the brakes. As it turns out, that isn't as much of a problem as I expected but the inflammation in my hands really was painful.

At rehab, my therapist and I concluded that not only do I have inflammation in my hands and elbows but also in my knees and feet. I had thought that it was just weakness but after doing some exercises they had for me, it became apparent.

My strength is coming back each day and I'm sleeping a lot less but my schedule is all messed up. I'm sleeping ~3am to ~11am. I've tried waking up early to get back on schedule but when the options after getting out of bed are to: 1) lay on the couch 2) clean the house (which will tire me out enough to need a nap) or 3) do my prescribed rehab exercises, it's really had to get going.

Eric

Eric's Blood Cells Already Rebounding!!

I just got the call from the hospital with the blood lab results from yesterday. His white blood cells were already 2200 (which is higher than it was on Monday), with 73.8% Neutrophils (which fight infection). The other counts included: hemoglobin at 11.1 and platelets at 157,000. All of this is looking really good! The nurse said that they don't even consider him neutropenic (susceptible to infection) anymore. :) I am so relieved!

Melissa

Medication Change-up

Well since I got home last Thursday, I've had horrible headaches. Laying down eased them quite a bit and sleeping was even better. We were warned before leaving the hospital that there was a strong likelihood that the headaches I was having in the hospital would continue. After a miserable weekend and start of the week where I was sleeping ~16 hr/day, Melissa finally got ahold of one of Dr. Cripe's nurses. She explained how bad my headaches were and how much I was sleeping so the nurse went to Dr. Cripe who said to stop taking Atra (the pills that were meant to block the gene transfer associated with my cancer) immediately. He said that the headaches were very likely due to swelling in my brain and that bleeding in my brain is a concern now. The nurse gave Melissa a list of things to watch out for such as blurred vision but I haven't experienced any of them.

I've taken Atra for a week now (last dose was yesterday morning) and was only supposed to take it for another week. Today when I woke up, my headaches were gone so that's a relief. I was a little disappointed to stop taking medicine that my doctors had decided would be good for me but this is obviously more important.

I'm supposed to be trying my best not to get sick for the next week or so. My blood work from Monday came back and my white blood cells had dropped from 4600 to 2000 since I left the hospital. For the most part, I'm staying holed up indoors but it's hard to resist going out for food. I suppose I could have a worst week to stay inside, I will probably be sick of golf after the next four days though.

Eric

Heading Home

I just received my last round of chemo this morning and we'll be getting discharged in the next few hours.

I haven't felt the chemo at all, it's been the other meds that have been messing with my system. They've adjusted those though so I feel pretty comfortable with the pills I'm heading home with.

Sounds like I'm going to need to stay away from crowds and sick people for a few weeks starting now but the real effects from the chemo shouldn't start kicking in for another 7-10 days.

I also finally got the clearing to drive a car this morning so I'm pretty excited about that. We've been trying to set up a meeting with my neurologist all week but apparently the message never got passed along. He was able to give the okay to drive over the phone but wasn't willing to take me off the anti-seizure medicines until I see him in person which won't be until May 28, unfortunately.

I hear it's supposed to be pretty nice outside. I can see IUPUI students (go JAGS!) walking around in shorts and t-shirts so I'm looking forward to getting out and getting home.

Eric

Spinal Tap

Hello!

It's Wednesday morning, and we're halfway through this round of chemo. So far, Eric has tolerated the chemo pretty well, but the anti-nausea medicine threw him for a loop yesterday. Apparently, the common anti-nausea medicine that they give chemo patients can sometimes cause severe headaches. So they switched his meds around a bit and gave him a cocktail of benadryl and compazine. It worked wonders on the headache, but also knocked him out for 4 straight hours. :) Apparently, IU has done studies in the past on the best way to treat headaches in the ER, and stumbled upon this cocktail. It was kind of interesting. Just to be on the safe side, the doctors ordered an MRI yesterday. This is to eliminate some of the scarier causes of headaches. They don't expect to find anything, though.

After he got back from the MRI, we watched Sherlock Holmes and did a few laps around the cancer floor. Apparently, we had to get a doctors order to leave the floor, which we got this morning. So as long as he's feeling up to it, we can venture out to the rest of the hospital and step outside a bit to get some fresh air. His chemo is ordered for 1 pm today, and he'll get his spinal tap chemo sometime between now and then.

Until later,
Melissa

Checked in and Ready to Go!

Hi Everyone!

It seems like a long time since I last wrote a post to this blog. Eric and I had a nice trip down to Indy this morning. We started off with getting his blood checked (everything looks good!) and speaking with the hematologist. We had A LOT of our questions answered and feel pretty good about this next step of the treatment. Eric will be getting the same chemo he did back in December (which is good because we know it is effective), but it will be a smaller dose. And though they expect the white blood cells to bottom out again, it should take a shorter time for the bone marrow to recover. This is because he is starting out with healthy bone marrow. Also, the pharmacist said that his body is more used to receiving the chemo, so this should help with the overall recovery time and help decrease the intensity of some of the side effects, like mouth sores. We also got a few answers to the frequency of treatments. They expect him to be fully recovered from this round in about 4 weeks, meaning that he should feel about like he does now. At that point, he will have his normal 1 month check-up with the hematologist, where they will check him in for a repeat performance. This should be the last time he will have to get the IV chemo. He will be getting the spinal tap chemo both now, and when he is checked in one month from now. This is delivered in one dose each time. In between, he'll be taking ATRA for about 2 weeks. After all of that is complete, he'll have intermittent ATRA treatment, and may have some more chemo delivered through a pill, but no one is really sure about that. Our normal hematologist is on Spring Break, so we were discussing these future plans with someone else. They said that the highest chance of relapse is within the first two years, so they will check him out every month for the first year, and then every other month the second year. After 5 years of being in remission, they will consider him cured. : ) All in all, it sounds like all the drama (doctor's word) typically happens with the induction chemo that we've already been through, and that people tend to handle these next two rounds pretty well. Once we get discharged at the end of the week, they'll check his blood twice a week to monitor his blood counts (and make sure he doesn't need any transfusions), which can happen up in Lafayette. He'll have to be very careful to avoid sick people and big crowds, but he'll be able to go through the recovery time at home. Obviously, we need to call if he gets a fever, but they'll be giving him prophylactic antibiotics and antifungals like they did the first time. This time through, he does not have all the catheters and ventilation tubes, which will be huge in reducing the chance of infection.

Also, we found out they are taking him off of the blood thinners!! They are not even concerned with checking on the blood clot, since there are no symptoms of it. Also, we should be getting a visit from the Neuro team, to discuss whether he still needs to be on the anti-seizure medicines and when he can drive. It'll be GREAT to get him off some of his drugs. It was starting to look like we were conducting a drug ring from our living room. ;)

Finally, the rooms on the hematology floor are GREAT!! They are MUCH more comfortable than the ICU. Not only do we have less equipment in the room (SO nice not to need it), but we have a flat screen, DVD player, AND a mini fridge! No need to worry about finding a hotel room in Indy during the final four, just stay in our room! ;) They also have a couch that is wide enough for a bed when you take the back cushions off. Very nice.

I think that is all for now. They just started his first dose of chemo. Here we go!

Love,
Melissa

P.S. Eric's weight is now up to 208 lbs, which is a MUCH better weight than the 160-some pounds he was the last time he stayed at IU.

Back to the IU Hospital

Melissa and I are heading back down to Indy tomorrow morning for more chemo. This round should go significantly smoother than the last. Melissa spoke with a Dr. Cripe's nurse this week and got some details. Due to my blood thinners, I will not be receiving chemo through a central line in my chest. Instead, they will be putting it through an IV which will only be hooked up for a little bit each day while they are giving me some of the most expensive posion known to man. In addition, I will still be receiving more chemo into my spinal fluid.

This weekend was a lot of fun, friends were in town from Thursday through today around lunchtime and my mom and dad came over for dinner. We played with the two dogs and one baby that were in town, did a little car shopping for Melissa (Joel, I liked your idea; unfortunately Melissa rejected the idea of me getting an S4 and her getting the TDi - she also rejected on the R8 in the showroom), grilled out and watched plenty of movies and basketball games.

I ditched the crutches this weekend and worked on walking without them. By the end of the weekend I was able to walk without swaying around, much, and am able to go up and down stairs without any crutches and without having to go one step at a time, although I'm still tugging on the railing pretty hard.

Eric

Medical Bills

So Melissa is keeping a binder full of medical bills. There has to be a couple hundred, seems like one for every blood draw. The best one came in the other day and we just opened it, it's the bill for 8 1/2 weeks room and board in the ICU down in Indy. I'll let you guess how much it was.

A.) $150,000
B.) $300,000
C.) $450,000
D.) $968,089.30

I looooooove insurance right now.







*edit* Hint: the first three answers are incorrect.

Home

Sorry it's been a couple days since I've posted. We had a couple of friends in town this weekend and then Sara and I spent today running around. We went to the outpatient therapy place and they assessed my balance. It came out pretty decent but there was some pretty serious lack of strength in my hips that showed itself when the therapist isolated the muscles. After that, Sara and I tried to get my handicap sign which was unsuccessful, apparently the BMV is closed on Mondays (how does that make sense?).

We got appointments with the therapist set up for several weeks out. I have two more appointments set up for this week. I also need to go in to get my blood checked a few times this week, Sara found a handful of labs to go to. The real trick is getting there since I can't drive.

I can't say enough about sleeping in my own bed, it's amazing how quickly I feel asleep the last couple nights. Melissa is very happy having me home. She was so happy that when our new couches came in today,she got home from work, we ate dinner and then we both took 4 hour naps on the couches.

Eric

1 More Day!

Four sessions of therapy today and then I'm done with inpatient rehab. I go home tomorrow morning!!

Both of my therapists had scheduled vacation days for today so yesterday was my last day with both of them, and they made me pay for it. I was going up and down stairs, walking on uneven surfaces outside, walking backwards, riding an exercise bike and arm bike, doing wheelchair pushups, the works. I'm pretty sore and tired today but shouldn't be doing too much exercise in therapy. I think we'll be doing mostly transfers in and out of the wheelchair, work in the kitchen and laundry, and getting clothes out of closets and draws with crutches. I'm going to need to do all of the strength and speed assessments again too so that we can get starting and ending results.

I should be starting outpatient therapy up in Lafayette on Monday, probably going 2-3 times per week.

Eric

New Toys

I received my insurance supplied crutches and wheel chair today. My therapist took one look at them and gave them back to the company that was dropping them off. She then called a different company and they dropped off a new set of crutches, wheel chair and a chair for the shower around 3:30. She took a look at the wheel chair and sent that back also but approved the crutches and shower chair. They are bringing over a new wheel chair tomorrow morning, this one will have wheelie bars!

We tried out the new crutches during our afternoon session. I walked around outside for a while and then we went back inside to try walking without crutches, in the parallel bars just in case. I was swaying back and forth as I walked so she said I wasn't strong enough to do that full time. We then worked on walking with a single crutch since RHI doesn't have a cane tall enough for me. I did pretty well with that, walking about 400' at a time.

This morning with OT we did the weekly assessment of my grip. When I arrived here, my grip was 25% of what it should be for someone of my age. Now it's up to 45%. They are going to do it again on Friday so they starting working on my hands quite a bit today because they would really like to have me over 50% by the time I leave here Saturday morning.

Eric

Updates

Sorry for the long time in between posts. Not a whole lot new happening, trying to get stronger.

Starting on Saturday I've started walking up and down a flight of stairs with the crutches under one arm and the other hand on a railing to simulate going up to our second floor where the bedrooms and shower are at home.

I've been walking 200' at a time with the crutches but start getting tired around the 150' mark and my knees start buckling. This weakness caused my discharge date to be pushed back today. Up until the doctors got together with the therapists around lunchtime, they were thinking tomorrow was a possibility but Friday was more realistic. I also learned that insurance won't pay for therapy on the day of discharge. I'm not happy with it but agree with my doctor's conclusion that waiting until Saturday is the right move. This will then leave a week and a half at home before going back in for more chemo.

This morning, they got me going early so that I could do my first OT session of the day in the kitchen, cooking breakfast. I made scrambled eggs only to come back to my breakfast tray full of more scrambled eggs. I made sure I didn't order any eggs for tomorrow. I'm finding what I'm sure most of you will think is obvious, walking and standing is one thing - doing it with a hot pan and breakable dishes is a completely new challenge.

A bit of news that really put a smile on my face today, I'm going to get a handicap sign for at least a year, as if I needed more confirmation. Who wants to ride with me to Smokehouse or the golf course?

Jeff, I'm steadily working through the Tower of Power cd's you sent, the nursing staff is loving them. I can't believe I didn't already own the entire What is Hip collection, I haven't heard half of theses songs. I have Howard Johnson and Gravity in the cue next, I'm starting to think the music choices are making me more friends than my charming personality.

Eric

Crutches!

Today my physical therapist took a chance and gave me crutches to try out, not in the conventional way but left crutch with right foot and vice versa. It went pretty well, I walked 150' on my first try and only really relied on the crutches for stability. After a couple of times I was leaning on them pretty hard and we had to move on to something else but I was told that we wouldn't use the walker anymore. If I do go home next week, I'll feel much more mobile using crutches than a walker and this takes a wheel chair completely out of the picture.

Eric

More Progress

Sunday I didn't have any therapy and it was terrific, a day to rest my body. On Monday I was ready to go. I did some more walking with the walker Monday and Tuesday, I'd been doing 100' at a time since Saturday. Today I kicked it up to 200'.

The doctors and therapists get together every Tuesday to discuss how patients are doing. Every week so far, United Healthcare has approved me for another week in the hospital or another week of therapy. When they discussed my progress this week, they thought that I may be able to go home as early as the end of next week but that would really require some pretty large steps for me to feel comfortable with that. They must have had the same thought because they kept my discharge date as 3/29, the day of my next chemo. The insurance contact here at RHI came in today and spoke with me, she had just gotten off the phone with UHC. They took a look at my progress and decided that they think I should be discharged next Wednesday. I guess this means that now my doctor is going to need to call each week and make a case for me to stay here if I'm not ready to go home on the 17th.

In OT this morning, they had me working on my hands by making me use a gigantic set of tweezers with a spring in them to pick up wooden blocks and move them from one box to another. Well I ended up pinching my hand and bleeding for an hour. Yet another motivation to get better so I can stop taking all of these pills, like the two blood thinners I'm on.

Eric


I forgot to mention, I got to try out some stairs today. I went up and down a set of 6 steps 3 times. This was a week before my therapist was planning on having me do them so again, positive things happening. I'm really starting to get excited about getting home, walking up the stairs and sleeping in my own bed.

End of the Week

Sorry I haven't updated in the last couple days, they've been working me pretty hard and when I'm not doing that, I'm eating or sleeping.

Thursday and Friday, PT worked my legs and abs really hard while OT worked my neck, back and hands. All of the OT work is pretty similar, they bring out a bunch of different games and I have to put this peg to that hole and then put it back. It's more or less like going to Cracker Barrel with less appetizing food and I have to sit up straight the entire time.

Today I didn't realize I was going to have any therapy but sure enough, right after I had finished off half of the Jelly Belly's my mom had brought me, PT came in. The gym was pretty empty so she wanted me to walk all over the place. I knew that was going to be my only therapy for the day so I decided to push myself. I was fine for the first 20 minutes but then the stomach full of sugar caught up with me and I had a huge crash and lost all of my energy. If it was just me, I probably would have stopped right then and gone back to bed but after a little discipline by ridicule, she got me up again.

Thursday, I walked about 20'; Friday I tried to double it and went 50' (both of these were after 3 other therapy sessions so I was already pretty tired). Today I went about 500' and rode a bicycle-type machine for 10 minutes. I think I'll be regretting that if they expect me to do therapy tomorrow.

I can't remember if Melissa touched on this earlier so I'll say it again. I've lost about 2/3 of the hair on my scalp. What's still there is well on its way for needing a haircut so Mom bought a set of clippers and I'm going to buzz my head down a bit tomorrow and just let it all grow out at the same time.

Another sign of recovery: The nurses have been having trouble pulling blood since the chemo fried my veins and they haven't been vi sable. One nurse told me that it sometimes takes up to 10 years for the veins to recover after chemo. Well Thursday morning, the veins in my feet and hands popped out again and they have been able to easily hit veins in my arm since. This is good because I was getting REALLY tired of being poked multiple times at 5:30 each morning.

Eric

P.S. How about them Boilermakers! Share of the Big Ten, first since the mid 90's.

First Day of Rehab

I'm going to try to make this pretty quick so I can get some sleep.

Today was pretty much all assessments of strength. I had two sessions of physical therapy where they focused on my lower body and abdomen and two sessions of operational therapy which focused on upper body.

In the morning I had PT first. I did some leg exercises and then took about 30 steps using the parallel bars. It felt pretty good, I used my arms mainly for stability and was able to walk the entire distance without any help. Immediately after that I went into an OT session but wasn't able to do much, I was so exhausted that I got pretty light headed and spent most of the hour laying down, doing some arm exercises.

After OT, I got to take a 1.5hr nap before lunch. I'm back on a calorie count so they review how many calories I eat after I'm done with my plate, which I'm having no problem with considering the amount of exercise I'm getting. Right now I supposed to eat at least 2400 calories per day, which is pretty difficult on lean hospital food, but I wouldn't be surprised if they uped that number due to the activities they're having me do. I guess I should mention that the threat they are holding over my head is that if I don't average 2400 calories during the 3 day calorie count, they will cut a hole in my stomach and put a feed tube directly into it which doesn't sound pleasant.

After lunch, they came back and got me again for more OT. They took some measurements of how strong my grip was using my full hand as well as a few different combinations of fingers. In the end it looks like my grip is about 25% of a typical 25yr old.

Again I got to come back to the room and get some rest before my last half hour of PT. This was a half hour because we were actually working to build muscle. It was hard but it made me realize what I need to work on the most.

After dinner, I got to take my first shower since the second week of December. It was terrific, all the hot water I wanted! I stayed in there until my neck was so tired I couldn't keep my head up anymore.

We'll see how tomorrow goes but I think I'm going to bounce back pretty fast if I can make it through all four sessions each day.

Eric

P.S.: I almost forgot, they pulled my peripheral IV last night also so I'm now free of all lines and hoses.

One Step Closer to Home

Hello everyone. I want to thank everybody for their your thoughts and prayers. It's really meant a lot to myself and my family. I'd especially like to thank all of the Campbells, Floras, Gotschs, Hesters, Wisthuffs, Rexeisens, Moeschbergers, Louis, and the Guidos who all went together and purchased me the laptop that I'm using to write this.

Sara has returned to NC, my parents back to IL and Melissa is getting back to work again so I'll try to keep everyone updated on my progress.

I have had quite a bit of progress in the last two days but wanted to let it all play out before posting.

As Melissa said, we've been having some trouble with my insurance accepting my next step of rehab. All of the medical professionals agreed that I needed to go into an acute rehab center which would give me the attention and therapy I am requiring to get stronger. United Healthcare (my insurance provider) wanted to send me to a nursing home since it'd be cheaper. Melissa had done a lot of asking around and settled on Rehabilitation Hospital of Indiana on the west side of Indianapolis as our preferred acute rehab facility so a representative came up and talked with us yesterday around 3pm. She made some calls and by 5:30 we were approved by insurance, accepted by RHI and my discharge papers were signed. I was transferred down here early this afternoon. The goal set forth by my hematologist is to be able to walk into his office and sit down under my own strength in his office on March 29. If I'm able to do this, they will check me in for ~4days and give me my first round of maintenance chemo through an IV, the same way they had done before which worked extremely well. If I am not strong enough by then, they will have to back down the dosage and administer it differently. So that's my goal, getting walking in 4 weeks.

Now I said that there was a lot of good news and this is true. Not only did we get over the insurance obstacle yesterday, but I also was able to transfer myself to a wheel chair, stand up and take my first steps (with the help of a walker and two physical therapists). I don't remember sweating so much last time I walked...

I start the intense rehab tomorrow morning at 6am so I'm going to roll over on my good ear and try to block out my roommates blaring tv and get some sleep. I'll write an update tomorrow with a summary of how therapy went, if I don't end up sleeping the rest of the day.


Eric

Follow-Up Visit with Hematologist

Hi Everyone,

Yesterday, Eric had his first follow-up visit with the hematologist. We had a pretty nice ride down to Indy. The ambulance drivers were nice and joked around with Eric quite a bit, and we listened to Bob and Tom all the way down (which Eric hasn't heard in a while). When we were going down the hallway to get to the hematology center, we just happened to walk past one of Eric's old critical care residents. She saw Eric when he was going through his worst times, and the look on her face when she recognized Eric was amazing. :) She was so astounded by how good he looks compared to when she saw him last (the day he woke up for the first time, so Eric doesn't remember her at all).

We had a good visit with the hematologist. This was the first time that Eric met him. The hematologist wasn't NEARLY as depressing as the last time I saw him, so that was good for me, too. We were able to talk about the plan of action where chemo is concerned, and get some help from him for the insurance company as well. The doctor said that Eric will have to go through at least 2 more rounds of chemo, the first starting a month from now. If Eric is strong enough to walk into the office, then he'll get the same chemo he got before, but in a much lower dose. This is the best option, because we already know that this form of chemo is very effective at taking care of Eric's leukemia. However, if Eric is not strong enough, they will give him some chemo to take orally (via pill). This type of chemo is not as strong, but will provide him with something until he gets stronger. All in all, it is very important for Eric to get stronger as fast as possible. This leads us to our discussion about acute rehab. When we had talked to the insurance earlier this week about acute rehab (where they provide a very intense rehab schedule), they came back and said that he won't get approved for acute rehab due to his diagnoses of leukemia and acute respiratory failure. (For some reason, they don't typically approve those cases, so Eric won't get approved.) So we spoke with the hematologist about this, and decided that he would write a letter to the insurance company to outline exactly why it is so important for Eric to get stronger as fast as possible. So hopefully, this will solve that problem. The hematologist went on to say that Eric will have to get several more doses of the chemo to the cerebral spinal fluid given by spinal tap. All of these chemo treatments are given prophylatically, to help prevent relapse. Eric started out with an extremely high white blood cell count, which is not normal for this type of leukemia, so they are trying to be extra careful with him to prevent relapse. In between chemo rounds, I believe they will also give the ATRA drug again (which helps keep the gene transfer that occurs with APL from happening).

I think that sums up what we found out yesterday. His blood work came back completely normal, which is great. Also, around 1pm yesterday, they took out Eric's feeding tube! That was the last tube that was in him, so it was a very good feeling to have that taken out. Plus, I think it was very annoying to him, since it went up his nose to go down to his intestines. So, the end of the tube just hung from his nose all the time...not fun.

Love,
Melissa

Quick Update

Hi Everyone!

Eric continues to do well with gaining his strength back. He's still having a bit of trouble sitting and standing, only now his limiting factor is dizziness, not necessarily weakness. This dizziness is expected, since he was laying down for so long. When this happens, the pressure sensors in your carotid arteries do not respond as well as they used to, and do not regulate the blood pressure to your brain as well. This will resolve in time.

Eric still has the feeding tube through his nose and is trying at all costs to get it taken out. Before this can happen, he has to prove that he can eat all the calories they want him to in order to stop losing weight. In fact, they really want him to gain weight, so Eric is trying to target all the high calorie items he can. :) I told him to enjoy this while he can, because doctors won't tell him to do this forever! Yesterday, the speech therapist opened up his diet to basically any kind of food, as long as there were no thin liquids (He's still having trouble swallowing really thin liquids like water). So today I promised to pick up beef brisket from South Street Smokehouse (one of his FAVORITES), so I think he is pretty excited.

We have Eric's first follow-up with the hematologist on Thursday, which means Eric gets to take another ambulance ride down to Indy and back. :) It'll be interesting to see what he has to say. I'm hoping to get a more definite plan for the rest of Eric's treatment (the maintenance chemo, more ATRA, etc). This will also be the first time Eric meets his hematologist. This is the one that did not have the best bedside manner, and it'll be interesting to see if that changes at all now that Eric is no longer in the ICU. Hopefully, the doctor won't be quite as pessimistic. I'll be sure to write what we find out from that visit.

Until later!
Love,
Melissa

Standing and Real Food!!

Eric stood up today!!!! He had several people supporting him, but he was on his feet! Twice!! Also, this morning, the speech therapist decided that he could swallow well enough to eat pureed food. He had lunch and dinner today of mashed potatoes, gravy, meat of some sort (it IS pureed meat....), sherbet, thickened grape juice (finally!) and cranberry juice, pureed peas (he didn't even touch those - too much like baby food), and frozen berry something-or-other. It sure smelled good, even if the texture was off a little. What a great day! :)

Love,
Melissa

Busy, Busy Busy!!

Hi Everyone!

It's been a while since the last post, and Eric has been getting stronger by leaps and bounds! He almost has full motion of his arms, which is awesome! I walked into the room yesterday to find his hands resting nonchalantly behind his head, and I said, "When were you able to start lifting your elbows?! You couldn't do that yesterday!" He just kind of shrugged, like it was no big deal. His voice has been getting a lot stronger, and today, they took out his trach!! It was such an easy procedure. They basically said they were going to take it out, and before he was able to think much about it, they just pulled it right out. Now, there is gauze and tape covering up the hole, and they said that it should heal itself in several days. The physical therapist worked him pretty hard today, and said that tomorrow he'll try to get Eric to stand for the first time. I don't think Eric realized how quickly he is getting better. It has been amazing to watch.

Meanwhile, I've been going back to work in the mornings, and am trying to figure out a good schedule of when to be in the hospital and when to take care of the normal, day-to-day things. Thanks to all who have helped out so much (dinner was wonderful tonight)!! To be honest, it is really nice to get back to semi-normal things again. Granted, I was never terribly "normal" to begin with!

Now, it's time for a good night's sleep. I think it will take a while before Eric and I catch up on sleep. I had a good three hour nap this weekend, and I still felt tired! :) I'll try really hard to not to let too much time pass before posting again.

Love,
Melissa

PS Eric said to post this in response to some of the comments from the other day:
"I want to drink a scotch old enough to order a scotch!"

Rehab and Good News on Trach

Hi Everyone!

Eric is having a good evening watching episodes of Top Gear on DVD. He had a pretty tiring day today. The occupational therapist worked his neck and core muscles this morning, then this afternoon, the physical therapist sat him up on the side of the bed. He stayed up for about 10 min (1 min of which he had no extra support!!). He really is getting much stronger, although I'm sure it's not as fast as he wants it to be. :) His voice is MUCH stronger than a couple days ago, he's able to brush his teeth, and his finger control is much better than before, too.

Also, the doctor said this morning that he's aiming to get his trach out by the end of the weekend! He's had it capped all day today and doing great. I think tomorrow they will try taking his oxygen supply away as well! He really just needs to work on his throat muscles to swallow better. He's allowed to eat ice chips and drink small sips of water (yesterday, he wasn't allowed to drink the water, so this is new, too). Now he wants to put the grape juice in the freezer and eat it when it's frozen. It's the simple things.

Love,
Melissa

Trach Capped!

Hi Everyone!

Here's a quick update before all the excitement of the day begins. Eric had a good day yesterday. We saw the Occupational Therapist for the first time. He was really nice and asked Eric a lot of questions to understand what he really wants to accomplish. Then later on in the day, they capped his trach tube! This means that he is completely breathing through his mouth and nose. They'll keep the cap on for several days, then take the trach out completely! This will be wonderful!!! Eric is also working on strengthening his throat muscles in order to swallow. He says that he keeps dreaming of lemonade, grape juice, and baked potatoes. :) He just really really really wants to drink some juice.

Love,
Melissa

PS Please send cards to our home address, now that we are close to home:
2510 Rainbow Drive
Lafayette, IN 47904

Seton Specialty Hospital

Hi Everyone!

Eric had a good trip back to Lafayette yesterday. He kept talking about how good it was to smell some fresh air while they moved him from IU to the ambulance. I got to sit with him in the ambulance, which was really nice. Eric was able to sit up and see the snow out the back window along the way. The snow around here didn't start till late last night, so we missed any complications from that. Which is wonderful, considering I couldn't get out of the neighborhood this morning. The beauty of living a mile from the hospital was that I was able to walk here. :) It was actually kind of nice, since it wasn't too cold and the snow was pretty.

Before we left IU yesterday, Eric had us reading the blog posts to him. We started at the beginning and got to about the end of January before we had to leave. He took the news really well, and said that he hadn't realized how sick he was. He really enjoyed hearing from everyone and understands a bit more why everyone is so excited to see him. :)

Now we are trying to settle in to the new routine and staff. I guess there is always the adjustment period: we're getting used to new protocols, and the staff is trying to catch up on everything that has happened to him in the last two months. We're really hoping to make a plan with all of the rehab people to set goals for us. It helps knowing what needs to happen before we can get to the milestones we want.

Stay warm out there, and be safe in the snow!

Love,
Melissa and Eric

Moving to Lafayette!

Eric's making the move to Lafayette this afternoon! He'll be going to Seton, which is located in St. Elizabeth Hospital off of Union. There, he will get a lot more attention for rehab and getting stronger. I'm really excited to be close to home again. My mom already drove up to the house yestserday with our dog, so I'll get to see him, too!! I need to finish packing everything up (you tend to accumulate a lot of stuff in the hospital rooms when you stay there for 2 months). I'll be sure to write a post this evening on how everything went!

Love,
Melissa

Super Bowl Sunday

Eric is planning to watch the Super Bowl with his dad and brother, Adam, this evening. This entire city is over the top in favor of the Colts. Eric really likes the Colts also, but has a lot of interest in Drew Brees due to his Purdue years. So he had his nurse add "Go Saints" to his trach collar (a clear plastic item that directs moist, oxygenated air into his trach). It has stirred up some controversy this afternoon. He also has his Drew Brees jersey over one of the chairs!

Eric's health is improving steadily. He is able to use his hands much better today, and the voice is coming back. So much easier to communicate when he can talk! He is off all IV medications, and is only hooked to a feeding tube. What freedom! He sat up for 1/2 hour again today, and seemed stronger as he did it.

Hope you all enjoy the game tonight! (For those of you that aren't football fans, enjoy the evening anyway.)

Kathy

Out of ICU!

Eric moved from the ICU yesterday. The move went smoothly for him, unlike a week ago when a similar move was too much for him. Clear proof of the improvement he has made in that time.

One of those improvements is that he now has a valve for his trach that allows him to talk. The voice is very weak, but I'm convinced it will improve in the next few days. He was anxious to reach this milestone so he could visit with folks. He also sat up in a chair for 1/2 hour yesterday. It must have been a relief for his tired back!

The doctors are nearly ready to release him from the hospital to a critical, long-term care facility. Melissa chose the facility in Lafayette for this next step in his care. We are hoping (if all goes well) to move there sometime next week.

We have been able to keep him up-to-date on all the cards and blog messages you have been sending. He really enjoys them. Thanks to all of you for your thoughts and prayers.

Kathy

Spinal Tap and More Sleep

Hi Everyone,

Eric had his spinal tap around noon today, and everything went fine. Eric asked Sara and me to stay in the room with him during the procedure, and he did really well. I know I would be so scared I would be bawling, but he barely even flinched. :) They were able to take a sample of his fluid, measure the fluid pressure, and give him the prophylactic chemo treatment. The chemo was literally green. We told him that they were injecting Mountain Dew into his spinal fluid. :) After the spinal tap, he was able to fall asleep and has been sleeping since. The poor guy needed sleep so badly. He slept well last night (though he thinks he got only 4 hrs, he really got much more), but he has a week's worth to make up. To tell you the truth, I was able to take a 2 hr nap as well, which did wonders.

When he's awake, we've started reading everyone's blog comments and cards to him. He really really likes hearing from everyone. We've only made it partially through the stack of cards we've received (we've gotten over a 100!!!) because we don't want to tire him out too much too fast.

That's pretty much all for today. Thank goodness for another calm day and sleep!

Love,
Melissa

Busy Tues after the seizure

Hi everyone,
As I posted in the status update last night, Eric had a 3rd seizure on Monday night/very early Tuesday morning. It lasted about 3 minutes. It's very scary to watch. I can't believe Melissa has watched him go through this 3 times. Strangely, Eric says he remembers this seizure. He doesn't remember the other 2 seizures, which is good. After the seizure, Eric had a CT scan at 1:15 am. It didn't show any changes in his brain. Eric was pretty responsive and talking to us less than 45 mins after the seizure. He didn't get much sleep after this, due to all the activity and nurses checking on him.

Eric continues to improve in breathing and use of his body. He can now scratch his own nose. :)However, the stress of moving his weak body is causing tremors, especially in his left arm. The doctors feel these are not related to the seizure activity, but rather muscle exhaustion.

Eric had an ultrasound of his left arm at 10:30 AM to check on the clot in his armpit. The technician said it didn't show any changes in the clot area. This is good and bad. Good that the clot hasn't increased or move, but we would like for the clot to dissipate as soon as possible.

The neurologist visited about 11:45 am. He said Eric's seizures are not a concern for brain damage, unless they are a sign of some other problem. The doctor ordered a spinal tap for tomorrow at 10:00 AM. The objectives are 1) measure spinal pressure to determine if his double vision is caused by this 2) look for leukemic cells 3) look for infection (although they are not expecting to find infection). During the spinal tap, they plan to give a prophylactic chemo treatment. The previous chemo back in Dec did not enter his spinal fluid, and this "maintenance" chemo should stay within his spinal system - not enter the other systems. We are glad they can give some more chemo. They feel Eric's too weak right now to get the normal round of maintenance chemo, so this is an alternative way to give it.

Eric hasn't been able to get a good night's sleep in a week. The doctors feel the seizures he is having may be stress relate (not actually neuro related), and lack of sleep lowers your seizure threshold. So, we made a big point of letting Eric get has much sleep as possible after all the doctors came through today. He has slept since 5pm, waking occasionally, but then falling right back asleep. I'm hoping he'll get a good 10-12 hours of sleep.

We read everyone's postings/messages to him today. Made him really happy.

When Eric woke up around 11:30pm asking for ice chips, he asked if I had heard about his good friends that just had a baby. He was excited for them and wanted to share the news!! :) So amazing to have such a loving brother.

Love,
Sara

Showed Eric the Blog tonight

Hi,
Thought everyone would enjoy knowing Eric saw the blog today. He woke up around 2am this morning and asked what day it was. I told him it was Sunday Jan 31st. He said, wasn't that yesterday? :) Made me laugh. Yeah, it was yesterday. He was right, it's Monday Feb 1st, very early in the morning.

He asked if we had been keeping his supervisor up to date. I told him we had, along with lots of other people. I told him we started the blog like he mentioned. I asked if he wanted to see it, and he did. He liked it. He was surprised by how many people are reading the blog.

:)

Love,
Sara

Good recovery from the seizure

Hi,

Eric has made a good recovery from his seizure. He had an MRI last night. It went well. He slept peacefully during the night.

This morning the neurology doctors talked to us about the results. They found very, very small bleeds/clots in his brain. They believe these are from his leukemia and all the clotting issues he was having. They are certain these small bleeds are the cause of the two seizures. They have placed Eric on anti-seizure medicine, which should prevent any future seizures. They said his body will absorb the blood in the brain. So, we believe this was caused by the leukemia, and his body will fix the issue in time.

Also, Eric was removed from the vent support and is again breathing on his own with just the oxygen rich air.

Eric's had a lot of visitors today. He loved seeing and talking to everyone. It tired him out, but you could really tell the happiness in his face to see friends and family. :)

Love,
Sara

Another Seizure

Hi,

Eric was having a good morning; his blood pressure and heart rate were under control, and he was looking a lot calmer than last night. Then around 10 am, he started having another seizure. This one lasted a bit longer than last time. The neurologists last night had said that sometimes chemo patients can have problems with seizures if their blood pressure goes up too high, which is why they were so aggressive with his medications last night. However, this morning, his blood pressure was not high at all, so that kind of ruins their theory. So, now we're back in the ICU. We're scheduled to have an MRI tonight, hopefully around 8 pm. They were saying that they would try to get him in between 6 and 7, but you know how hospital schedules are... :) So now, Eric is on seizure medicine. We're hoping they find a reason for the seizures with the MRI. That way, thay can treat the cause and take away the seizure medicine. If they don't find a reason, he'll continue to take the seizure medicine for 5 years before they start to ween him off. Seizure medicine = no driving for Eric, which I know would disappoint him.

On the bright side, Eric came out of AFib with only the help of some medication. They started the meds around 2 pm and by 2:20, he was back in normal sinus rhythm. He's been pretty dopey all day today, since they gave him a lot of ativan (one of the sedatives that he had been on) to treat the seizure he was having. Apparently, ativan is also the medicine of choice to calm a patient down while he is having a seizure. Now, he is starting to come around a bit. It is just enough that he'll answer questions, but then falls immediately back to sleep. I asked him if he remembered having a seizure today, and he said no and looked confused, so that made me really happy. After watching him go through two seizures, I would not wish anyone to remember going through one.

Well, now we are just waiting for the MRI and will hopefully get results tonight. The resident assigned to Eric is on call all night. He's been pretty nice. He's a tall guy, too -- actually a half inch taller than Eric. So he's been connecting well with Eric. They were joking around about it before Eric went into his first seizure. I was happy that both the nurse and his doctor were in the room at that time. I guess until then, we are back to waiting! Oh boy! (Ok, I'm being a bit sarcastic.) I was just hoping that the roller coaster was finished.

Love,
Melissa

Busy Friday

Hi everyone,
Eric had a busy Friday. He is very aware and mouthing full conversations with us. It's great that he can tell us what he wants and where he hurts. He can't actually talk yet, but the doctors assure us it will come.

In the morning, Eric had an EEG test (electroencephalogram). This test measures and records the electrical activity of your brain. Eric had a seizer on Thursday and the doctors where trying to determine if was any brain damage. There is a strong hunch that the seizer might be due to withdrawl from the strong drugs he's been on. We should get the test results today.

Eric had his first physical therapy session yesterday. The Physical Therapist showed us what exercises Eric should do. Eric was already asking for his arms and legs to be moved around, so he was definitely ready for this. The Physical Therapist did a few different movements with him, and was very pleased with his quad response (large leg muscles), arm movement, and head movement. They actually sat Eric up for 5 mins. They had him sit on the side of the bed, and usually a patient's feet won't touch the ground. But of course, our guy is tall, so they sat him up and his feet were fully planted on the floor. :) Sitting made him dizzy, but it sure was good to see him up right.

Immediately afterwards, the nurses packed Eric up and moved him to the less intensive care unit. He is now in the Medical Progressive Care Unit (MPCU). It's on the same floor, but a different wing. This was the unit Eric started in when he had to be intubated. All of this was a lot of activity for Eric. It really tired him out.

Shortly after the move, Eric started to have irregular heart beats. It's called atrial fibrillation, aFib for short. Eric had this once before at the very end of Dec. In atrial fibrillation, the regular electrical wave in the heart does not occur in the upper chambers of the heart. They are treating it with a drug that keeps his heart rate low. They believe his heart will revert back to normal rhythm soon. The doctors shocked him in Dec to convert him back to a normal rhythm, but they don't plan on doing the shock this time.

Eric's blood pressure was also very high right after the move (~200/140). They gave him blood pressure medicine, and in an hour his blood pressure was under control. In this new room, the monitor that displays all of his vital signs is right next to his head. It dings right in his good ear when something goes out of the control limits. It was really starting to annoy him because he was trying to sleep. At one point he was giving the monitor the evil eye. I told him that his blood pressure was too high, and that's why it was going off. So amazingly, the next blood pressure reading was 118/66. Pure coincidence, I'm sure, but it was still funny that it appeared he willed his blood pressure into normal range. :)

Eric has been able to sleep in 2 hour intervals during the night. Unfortunately they have to give breathing treatments and take blood sugars during the night that wake him up.

Overall, Eric continues to heal and build his strength. He is doing great!

Love,
Sara

PS

I forgot to mention that this morning, they removed the chest tube on his right side. They're watching the left to see if that one is ok, then ll wipossibly take it out tomorrow. It felt so good to see another line coming out of him! One more step to recovery!

Melissa

Wednesday Evening

Hi,

Eric has been a lot more awake today. First thing this morning, he asked us to move his arms for him. He's probably pretty stiff from laying in one position for so long, and this allows him to try to work his muscles, too. I'm trying really hard to be better at lip reading, but apparently, I'm a slow learner. He's been on a trach collar for most of the day. The Ear, Nose and Throat doctor said that the next step is to deflate his cuff on the trach he has now (they switched it out this morning to keep it clean), then they'll move to a smaller trach with a valve to allow him to talk. The next step after that is removing it completely. Hopefully, we will move quickly through this. He's been doing so well off the ventilator during the day, that I'm hoping this will be the case. We still haven't seen a physical therapist (PT) or a speech therapist (ST). The PT will give us a better idea of what we can do to help him out. We're moving his arms and legs when he asks us, but I don't want to do this too much or hurt him. The ST will do a swallow assessment to see if he can swallow liquids. Since he had the ventilator tubing in his mouth for so long, it expanded his trachea a little. This makes it difficult to swallow correctly, and they want to make sure no liquids get down into his lungs before allowing him to eat or drink anything.

We started to talk today about longer care rehab centers. These are centers that people go to directly out of the hospital that will work with them up to 25 days, as needed. If necessary, patients can then move onto other rehab centers for more therapy or care. It sounds like we'll be heading from the PCU to one of these rehab centers. This is where Eric will get a lot of his physical therapy. They recommended one around the block from IU hospital and one in Lafayette. It would be really nice to be closer to home. They both have their perks, though. Does anyone have any experience with Kindred (Indianapolis) or Seton (Lafayette)?

I told Eric today that his favorite racer, Michael Schumacher, is coming out of retirement and will be racing the Formula 1 circuit. He REALLY perked up at that. Then I told him that he won't be racing for Ferrari, but for Mercedes. He definitely gave me an outraged look. It was really nice to see his reactions.

I know new posts haven't been very frequent lately. Now that he's more awake, I find that I'm a little more busy. :) So know that if there is a long time between posts, it's because things are going well.

Love,
Melissa

Trach Collar

Hi,

Eric made some more improvements with his ventilator today. About midday, he was moved to a trach collar, which basically meant he was breathing completely on his own. All it supplied was a little more oxygen than normal air. He was on and off of this twice today in 2 hour durations. Now, he's back on volume control mode on the ventilator to give him a break. He's completely off of both sedative drips, with only small doses of ativan (one of the sedatives, anti-anxiety) as needed tonight. The idea is to get him even more awake tomorrow.

He was communicating with us even more today. It gets a little hard, because he can't talk with the trach tube. Plus, he hasn't moved or talked in 6 weeks, so even when he mouths words, we have a hard time knowing what he is trying to say. I'm sure this is very frustrating for him. I just wish I could do more to make him comfortable. He's also starting to try to move around a little in the bed. He is so weak, and I'm sure he hurts pretty much everywhere. I wish I could make it easier on him. We're all so happy to see him like this, and he probably doesn't understand why; at least, I hope he doesn't understand. I'm starting to sleep at the hospital again, because I don't want him to wake up and not recognize anyone.

He had a fever yesterday, peaking at 101.5 F, but now that is almost completely gone. It will be so nice to start taking lines away from him, since those are the most likely sources of infection.

I wanted to thank everyone again for all of the cards, comments, emails, and packages. We're going to have a fun time showing them all to Eric once he is more awake. I think we've gotten over 100 cards since we've been here. They've been absolutely wonderful to receive and read. It is truly amazing the amount of support we have, and it means so much to all of us here.

Love,
Melissa

Another Good Day

Hi Everyone!

We just saw the kidney doctors, and the first thing they said was, "Well, you really don't need kidney doctors anymore!", so they are signing off! The nurse is going to take out his dialysis catheter in a little bit, so that is one less line that is in him. Plus, this one was in his neck, so I'm sure it will be more comfortable to wake up to. They've already reduced both sedatives today. He's been awake a lot more this morning. He had his eyes open enough that I went ahead and put his glasses on for him. Every time we ask if he is in pain, he shakes his head no. He's breathing really well, so I think we might be able to move out of the ICU in a few days! The next step is to get him off the ventilator and put a collar on his trach tube. This supplies oxygen without any positive pressure for breaths. Then, once they've decided he can handle this well enough on his own, he'll be able to move from the ICU to the Progressive Care Unit (PCU). The last time we were there was Dec 12th and 13th. He'll still get a lot of care, but the room is much more comfortable to be in. We have not yet seen the Infectious Disease doctor today, but she said yesterday that she was planning on signing off today as well. He has made so much improvement in such a short time! Everyone that has helped us out these past 6 weeks keep stopping by to see him, especially since he looks so different and more like himself. It is so nice to get this kind of attention, because we've definitely had the other kind while we've been here. I am just so happy and so grateful!

Love,
Melissa

Initiating Breaths

Good morning!

When I arrived at the hospital this morning, I found out that Eric was initiating every breath on his own! His oxygen setting on the vent has been reduced to 30%, which is as low as they can go. The vent still helps push some air in, but the doctor said that he is breathing about 80% on his own. :) Plus, I got the numbers that they watch kidney function, and everything went down again on their own. We haven't seen the kidney doctors yet, but I bet they will postpone dialysis again! :) He's been opening his eyes and looking at us all morning. I think they are going to start trying to ween him off of his sedatives. This process all depends on how he reacts to the loss of his sedatives. We don't want him to get too agitated or be in pain, so this could be a slow process. That is alright, though. He has improved so much in the last couple days!!

Love,
Melissa

REMISSION!!!

We just got the news that the PCR test came back negative!!! The hematologist's are confident enough that he is in remission that they do not feel like he needs to have a bone marrow biopsy!!! What a great day! Earlier today, when he came back from the tracheotomy, he opened his eyes. I started talking to him, and he actually smiled at me! This is the first response I've had from him in almost 6 weeks. It was so nice to see!

The kidney docs say that his numbers are still looking fine. He still does not need dialysis, and they'll reassess him tomorrow. :) This is the longest he's been without dialysis. The critical care team say that they're going to try to ween his sedatives this weekend, and hopefully get him off of the ventilator. Since he has the trache, they'll be able to disconnect and reconnect the vent as needed (ie possibly reconnect at night, or when he gets really tired).

WHAT A GREAT DAY! Thank God for all He has done for us!!!

Love,
Melissa

Trach went fine!

He's back in the room and looking good! It's so nice to see his face and mouth again! The ENT said that he had one of the best looking trachea's she's seen in a long time, and that everything went smoothly. : )

Still haven't seen any doctors.

Love,
Melissa

Tracheotomy Time

They wheeled Eric out of here around 7:30 this morning. His air under the skin had gone down quite a bit, so the ENTs were all happy. They said he should be back here around 8:30 and that it really takes more time to get him down there and ready, than to do the procedure.

He's still off of dialysis! I haven't seen his numbers yet, but I think they are still fine. They are slowly increasing, so he'll need dialysis again, but they are changing at a slower rate than before.

We haven't seen any other doctors, so I should have more to update later.

Love,
Melissa

Thursday Midday

It's before noon and most of the doctors have stopped by! Normally, we'll be sitting in the room all day wondering when some of them will drop in. This is what they all had to say:

Critical Care:
Still see something in his lower right lung. It could be pneumonia, so they are switching around his antibiotics to target his lungs more. They took him off one broad range antibiotics yesterday and are switching the other today. They don't like keeping people on broad range antibiotics for too long, because it can cause species to become immune. They also said that it is possible that this area in his lung just looks worse because everything else is looking better. They think that his increase in oxygen requirement is due to his coughing up the mucus, which is good, too.

Kidneys:
He's been off the dialysis filter for 19 hours, and his numbers still look fine. They said he does not need dialysis today, but will continue to watch. They have a feeling that he'll still need it, but he's going in the right direction.

I already passed on the information from the Ear, Nose and Throat docs as well as the hematologist. All in all, is sounded good today! Hopefully he continues to rest. He's had his eyes open yesterday and today. It was nice. His heart rate and blood pressure did not increase, so I don't think he was agitated, but I do think he was listening. I'm hoping that his procedure goes well tomorrow, we get some good news, and that they can start waking him up in the near future.

Love,
Melissa

Still No News

We waited around all days yesterday to hear from the hematologist, only to find out that we might get the results on Friday. He did stop by today to explain a bit more about his thought process with the tests, though. He explained that there are 3 criteria for remission: 1) peripheral blood counts come back normal with no cancer cells (we already have that) 2) Bone marrow biopsy shows less than 5% blasts (immature cells), and we all have blasts 3) Molecular studies with the PCR test (which he sent out) comes back negative indicating a complete molecular remission. He thought that this test would come back sooner than it has, with the thought that if it came back negative, we can save Eric the discomfort of going through a biopsy. If it is negative, then we can stop giving him ATRA, and we are almost certain that he is in a remission. We'll then wait for him to get better to discuss maintenance therapy. If it comes back positive, he'll then schedule a bone marrow biopsy and continue to give ATRA. If the biopsy come back negative, then we wait for him to get stronger and discuss the issue of the risk of relapse. If the biopsy comes back positive, then we have a very difficult discussion on what to do, since he can't handle more chemo in his current state. He did say that the chances of the PCR test coming back positive at this stage of therapy for anybody is fairly high, but they don't normally request this test at this stage... meaning there isn't much data. Also, Eric had a very high white blood cell count initially, which statistically reduces his chance of remission. It's not really good news, but at least we understand more.

He seemed to have a good night. They had to go up on his oxygen settings again to 60%. I think he's been coughing a lot during the night and this morning and getting a lot of mucus out. I haven't seen the critical care docs yet, but I think this is good. He needs to get everything that has built up the past month out of his lungs to breath easier. The kidney docs decided yesterday to try him off of dialysis. His kidneys appeared to be functioning better, but they can only really tell when he is off of dialysis. So, they took him off around 4 pm yesterday, and 18 hrs later, his vitals still look good! His BUN increased as of 2 am this morning, but his creatinine (which is what they use to determine kidney function) is still in a good range. I'm anxious to hear what the kidney docs have to say this morning.

He's still scheduled for a tracheotomy tomorrow morning at 7:30, but the doctor is concerned about the air under his skin. He was saying that this could pose a risk of infection during the procedure, but he really needs to get the ventilator tubes out. He said he'd reassess him tomorrow morning, to make the final decision.

Pray hard for the PCR test to come back negative!!! He's looking so much better, and it would be so hard to hear that his leukemia might still be there.

Love,
Melissa

Tracheotomy Pushed Back to Friday

Good morning!

We found out late last night that the OR had to reschedule Eric's tracheotomy for Friday. They apparently were over booked, and Eric had some swelling in his chest and face (air underneath the skin from the ventilator), so he was the one they decided to push back. His swelling has gone down quite a bit by now. The doctors are still watching it just in case it indicates that another chest tube should be put in. Last night, they were also able to reduce his oxygen to 40% (from 50%) and keep the dialysis machine running. All of his vitals look nice and stable, too! I think they are going to try to start weening him off of his steroids and antibiotics today to see how he does. They're not going to completely eliminate all the meds, just try to get him to lower dosages.

A small concern is that his hemoglobin has been dropping the last few days. They were initially thinking that this drop was due to the problems we had with the dialysis machines. Every time they would clot or go down, he would lose blood in the tubing and the filter. This was happening fairly frequently, so the docs were not really concerned about the hemoglobin loss. However, they started a heparin drip yesterday to help with the dialysis, so they are being extra careful about watching for bleeds. Right now, he is getting a bag of red blood cells, so that should bring him back up to normal. It is so nice thinking that we went 11 days without getting any blood products. This is compared to the beginning when he would get as many bags transfused as they could in 24 hours.

Now, we are waiting for the doctors to make their rounds. We should hear some results today from the blood test for remission. I REALLY do not like our current hematologist's bedside manner, so I get nervous every time I think about it. Well, I guess I get nervous every time he walks into the room, but now with pending results, I'm a little more anxious.

Love,
Melissa

Waiting on 3rd Chest Tube

We thought earlier that they were going to place another chest tube on his left side (since there is a divider between the lobes of the lung), but since his pressures on his ventilator went back down, they decided to hold off on that. They did have to go up on his oxygen settings on the vent, though. They are now at 50%. They had just gotten the dialysis machine back up and running with the new dialysis catheter, but are now having the same problems with placement. Hopefully they can get it repositioned, since he really likes being on dialysis. Everything tends to be more stable when he is on that.

They have scheduled to do the tracheotomy tomorrow at 1 pm. They say that the procedure should take about an hour. I don't know if this includes travel time, which is probably more difficult than the actual procedure because of all of the things connected to him. I'm really glad that they got him in this early. It should be a lot more comfortable for him. I think they can size the tube a bit better, as well. We've been having slight sizing problems the whole time he's been here with the ventilation tubing. I'm not sure when they will start trying to ween him off of his sedatives again. It all depends on how he takes to the ventilator settings, his vital signs, and whether or not he has an infection. Time will tell.

I think that covers all of the new updates.
Love,
Melissa

Dialysis equipment

Hi all,

Eric had a fairly restful night. He continues on dialysis, but with a few equipment problems. The doctors are putting him on blood thinner - quite a change from a month ago when we couldn't keep his blood thick enough. Blood thinner should make the dialysis process go smoother.

I've updated Eric's white blood cell and platelet counts again. The platelets continue to go up, which is good. Eric's white blood cells are a bit above normal probably due to infection. On a good note, his white blood cells have been dropping the past two days, back towards the normal range.
Love,
Sara

Another Chest Tube

Hi Everyone,

Eric had a good night last night, which means I was able to get a good night's sleep. :) They were able to completely ween him off of the blood pressure medicine (which is wonderful!!) and lower the ventilator settings to 35%. This is lower than it has been since before Christmas! Another thing of note (at least to me) is that they replaced his central line yesterday to help prevent infection and replaced it with a COOK catheter! I've been waiting 5 weeks to see one of our products being used. I KNOW he'll get better now! :)

They also noticed another small pneumothorax on his right side this morning. They placed a chest tube on his right side, so he'll have matching scars. Both of the pneumothoraxes were pretty small and have stopped releasing air, so that is good. I'd rather have a small hole that a big one. They'll leave these tubes in until he comes off the ventilator, but no one is concerned about them. We're still waiting to hear from the Ear, Nose and Throat docs about scheduling a tracheotomy. I think everyone is in favor of doing this. It will be more comfortable for him, reduce the chance of scar tissue forming in this throat, and it should be easier to ween him off of the ventilator. Though he is getting close to being able to breathe on his own, it seems like his lungs are very sensitive to ANY changes in his body. This is basically what happened the other night. He had a fever, and it threw his whole body out of whack. It resulted in causing his lungs to not work correctly. I would hate to put him through the trauma of waking up with tubes down his throat only to have to put them back in immediately. With a trache tube, you can unhook the ventilator and hook it back up really easily. Once he is a bit stronger, they'll be able to take it out and let the hole heal.

As for other good news, his white blood cells went down again today to 19,000. This is still on the high side, but it might indicate that the earlier increase was in response to the infection/fever he had the other night, and not from the leukemia. These cells are all still normal, as well. This is all very reassuring to us, even if we have not heard results from the tests on remission.

Until later,
Melissa

I'm tired of late night weekend excitement

1:30 AM Sunday morning

Hi,
Well, we started out the day with a desperate need for dialysis. Eric's BUN, potassium, and phosphate had increased very quickly overnight, so they did the fast dialysis on him to return him back to normal. He also had a temperature of 101.3F, so the doctors decided not to try to wake him up until he had stabilized a bit more.

We had a fairly quite day until around 7 pm. He started having trouble oxygenating, so we had to increase his ventilator settings to 50%. Then his temperature started spiking more until it reached 102.4 F. As this was happening, we couldn't slow down his heart rate and his blood pressure started bouncing around and trending down. They ended up stabilizing him with some more meds for both the heart and the blood pressure. Then he started having more trouble with the pressures in his lungs (the volume of air needed to ventilate and get oxygen in was resulting in very high pressures again... approx 40 cm H2O). All the while, we were dealing with a resident who we were not very confident in.

I basically argued with him for 20 min telling him how the ventilator works (he was somehow thinking that pressure and volume worked independently from one another regarding CO2, and would NOT let the subject drop). And then every time he would talk to us about a course of action, he would switch to a complete opposite plan mid sentence. Needless to say, both Sara and I were a bit on edge and feeling like we needed to second guess everything he did. End of story, 5 hours later he has relatively normal stats:

HR: approx 100 bpm (on the heart rate medicine)
Temp: 97.5 F BP: 127/57 (on the BP medicine)
O2 saturation: 97% (ventilator set at 60% O2 and 5 PEEP)

The only concerning thing is that his lungs are still requiring a lot of pressure. Hopefully now that everything else is more under control (and he's back on slow dialysis), they will slowly get better. They are also planning on starting ativan (the 3rd sedative, and longer lasting one) again.

I have a feeling that since his lungs are so susceptible to any change in his body that they may opt to do a tracheotomy. We'll see in the morning. I'm really hoping that things continue to settle down.

(Oh dear, that doctor just walked in again... I think we've determined that he just likes to talk, despite whether or not he knows what he is talking about)

Love, Melissa

P.S. Sara updated the graph below with the past 2 days blood count results. Click to enlarge.

Friday Afternoon

They're still weening him off of the sedatives. He's definitely starting to open his eyes more and try to move around more. Slowly and surely!! They just did another blood gas, and everything was normal without dialysis!!! He is just doing better by leaps and bounds today! I think back to the news we got on Sunday, and look how far he's come. All of your thoughts and prayers are working!

Love,
Melissa

!!!!!!!!!

Oh my goodness! They're waking him up!!! Might take a few days to ween him off, but they're trying!!

More later when I can think more coherently.

Love,
Melissa

Calm night and good blood counts

Hi everyone,
We had a very calm night last night. Eric made some improvements on his lungs. They are going to reduce the vent settings today. The doctors are back to hinting at maybe weaning him off the vent, which is soooooooooooooo exciting. Yesterday they were talking about going to a tracheotomy, which is a set up for much longer term breathing support.

Below, I plotted Eric's blood counts over the past month, platelets and white blood cells. When Eric checked into the hospital, his white blood cell count was way too high (over 100,000), and his platelet count was way too low at 5000. The green lines are the four chemo treatments. They were giving Eric something on Dec 11-13 to kill off the WBC, but didn't start the chemo until they had an exact diagnosis on Dec 14. Today, Eric's white blood cells are 5800 (normal range is 5000-10,000) and his platelets are 81,000 (normal range 150,000). Click on the graph to get a bigger image.

Love,
Sara

Hi everyone

Chest Tube

Hi,

Last night, Eric had a small pneumothorax (hole in the lung) at the top of his left lung. It did not cause any problems with his ventilation status; he was still able to oxygenate and release CO2 well. However, it made the swelling go up in his chest, neck, and face. So this morning, they placed a chest tube. They were actually able to place it in the same exact spot where he had a chest tube from his car accident 8 years ago. The doctor said it was really easy to place because of it, since his scar made a nice target. : ) Hopefully, this will help with the swelling and with lowering the pressures required to inflate his lungs (since we're relieving the pressure building up directly outside of his lungs).

Sara's already updated everyone on his latest numbers. I just wanted to add a little clarification on the conversation with the hematologist last night. I think the normal course of therapy would be to give ATRA until his cell counts returned to normal, then only give it intermittently for several more months (approx 2 weeks every month). Patients normally undergo maintenance chemo as well, but I don't know the normal timeline for that. The hematologist was saying last night that they will check his blood for evidence of leukemia, and if there is none, he'll stop the daily dose of ATRA and give it intermittently, which is normal. He did say that he thinks Eric is too sick for more chemo, but we'll see how things pan out. Eric has the capability to surprise them all! We do know that his road to recovery will be long. It will take a while to get him off of the ventilator (they are talking about doing a tracheotomy), and it will take A LOT of physical therapy to build his muscles back up so that he can walk again. He is a very determined person, and I know he will work hard to become more independent again.

I guess for now, we're waiting to hear the results of the blood test. We're hoping for steady steps in the right direction!

Love,
Melissa