Bob to STAY in Boynton Beach...

Family and Friends,

After days of fighting with U of Miami/Jackson about trying to find a bed at their hospital so that Bob can receive his chemotherapy that is 55 days overdue, they finally called this morning to tell me that they had a bed for him. Upon further investigation however, they decided that Bob was going to share a room. I reminded them that Bob needed chemo, that he would be neutropenic soon, and that he had MRSA. They basically told me "too bad" and said it's double room or nothing. In addition, I wouldn't be able to spend the night with him either. I asked about the special air mattress that Bob had been using because of his bed sore wound, and they blew me off on that too. After relaying this to Bob, he'd had about enough. He decided that he was going to stay at Bethesda. Although the doctors may not round 24/7, and they are not on the cutting edge of technology, they do know him as a person and treat him like he matters. Because he's been there for 2 months all the nurses know him, they have a vested interest in keeping him alive. They kept him alive the first time when his liver, kidneys and lungs shut down and he was bleeding internally. I'm satisfied that they can do it a second time with the lesser chemotherapy too. The only way we would transfer him is if he needed a transplant, and he's not at that stage right now.

I spoke with Bob's oncologist and they are starting the chemo today at 6pm. Please say a prayer or wish him luck.

Love and thanks,
Michele

Still waiting on transfer...

Dear family and friends,

I have been very frustrated with UM and Bob's transfer. We are still waiting on a bed for him at Jackson Memorial and they are not too friendly in the admitting department there. I really hope that we are making the right decision with regard to transferring him.

For the good news, Bob is getting around so much better! He is now able to walk with a cane and use the restroom on his own. It is definitely giant strides from 2 weeks ago where he could barely lift his hands. We are working on trying to put some weight on him now.

Also, I bought Bob a belated birthday gift. He got a blackberry, so he's able to read his email again (at least temporarily until the chemo starts) and he also has access to his facebook page.

Finally, I'd like to say a big thank you to Mike "paper" Stutchner. He participated in the IPA Power Station Pro-Am last weekend and wore a shirt that said "lift strong for Bob Youngs". I just one of them in the mail. He had all of Bob's powerlifting friends sign it. I am going to give it to him today and hang it on his wall in the hospital. I really think it is going to make him happy and lift his spirits.

I promise I'll write more when we get to Miami. Bob's friend Dave is coming on Sunday to help me and I know we'll have a lot to write about.

Love and thanks,

Michele

R.I.P. Renegade 1998-2009

Family and Friends,

Yesterday was a very sad day for our family. My sister's dog Renegade had to be put to sleep. He was 11. Although he was my sister's dog, my whole family felt like he was all of ours. I remember when my brother-in-law Tony brought Ren home to my parents house for the first time. He was such a cute puppy! He tried to bite my toe, and when he ran, he would always fall over because his head was so darn big!! He reminded me alot of the movie "Marley and Me". He was a big dumb dog that did stupid things sometimes, but we all loved him nonetheless. He would never bite anyone, possibly lick you to death. My dad loved Renegade most of all. He'd go over to Lori and Tony's house with a pocket full of dog treats and Ren would drool all over the place. My dad would hide the treats throughout their house so Rene could find them. Renegade was 125 lbs and died do to complications from hip displaysia on his hind legs. Renegade was a great dog and we are all going to miss him.

I know this blog is about Bob's recovery, and I'll write about that next, but I needed to say this about Renegade. With everything that's been going on, the loss of him really affected me yesterday.



Love and thanks,
Michele

Bob to be transferred to University of Miami cancer center

Family and Friends,

After speaking with Bob and his oncologist last night, Bob feels that it would be in his best interest if he was transferred to the University of Miami Slyvester Cancer Center. I have been making phone calls and hopefully we can get him transferred by tomorrow so that he can start chemotherapy. Everything else is going pretty well. Bob is in good spirits after learning his cancer hasn't come back.

I will write later when I have more to report.

Love and thanks,

Michele

MIRACLES EXIST!! Bob still in remission!!

Dear Family and Friends,

I received a phone call from Bob's oncologist this afternoon. Bob had me on speaker when she got into his room to deliver the news. She said that she spoke to the pathologist this afternoon regarding Bob's prognosis and that miraculously Bob is still in complete remission. They classify remission as less than 5% blast cells in the body and initial reports indicate that Bob has less than 2%. The doctor was very surprised, as was I, because all indications in his blood work (the drop in hemoglobin, platelets, and white cells) are all indicative of the cancer coming back. She had no explanation for it. Bob will still need to receive 3 day consolidation chemotherapy which is still very risky due to his condition, but it will not require him to be transferred to Boston. He and I will be discussing whether or not he wants to remain at Bethesda for continued treatment or possibly go to UM Sylvester in Miami. Either way, they are going to want to start the chemotherapy this week.

In other news, Bob took a barium swallow test to see if he could stop drinking thick liquids and move back to regular liquids like water. He has to drink barium and they do xrays to see if the liquid passes to his stomach or if some gets aspirated into his lungs. He passed with flying colors! Good news abounds!

Finally, I'd like to thank everyone again for all the donations received, and special thank you to Mussa Mohkami, a powerlifter from Germany for writing Bob a letter today. Although Bob has never met Mussa, his letter was very inspirational and I read it to him this morning when he woke up. Here is an exerpt:

"I do belive in an higher power, a power that is bigger than man. The mind is a great tool - it can make the impossible, possible. I belive when you think positive and put all your energy and the energy of friends and family and loved ones fans and iron brothers all around the globe together there is nothing that you can´t do!"

I echo his sentiments exactly. Thank you to everyone who has been pulling for Bob. It means more than you'll ever know.

Love and thanks,
Michele

Tracheostomy removed, Bob needed blood again...

Family and friends,

Yesterday Bob's blood results came back and they were low which was very concerning for the doctor, especially since Bob hasn't been bleeding. She said it may be an indication that his leukemia has come back. We won't know those results for sure until late Wednesday. Hopefully she's wrong. So in the meanwhile, she had to give Bob 2 units of packed red blood. His counts were in the 7s. In addition, Bob had his trachesotomy removed. He said that it didn't hurt a bit. The only thing is that his throat is very sore and he can't speak again temporarily because it hurts too much. He's got his swallow test later on this afternoon that he's looking forward to because if he passes he can drink clear liquids again.

Please say a prayer for Bob in hopes that his leukemia hasn't come back. If it has, he's going to have to be transferred to a specialty cancer hospital possibly out of state and he's going to have a long road to battle, worse than before (if that's possible).

Love and thanks,

Michele

Bone Marrow Aspriation Completed

Family and friends,

I stayed at the hospital with Bob last night because the oncologist said she was going to perform the bone marrow aspiration at 6:45 this morning. She gave Bob Ativan and Demerol to help with the pain and anxiety. He did fantastically. We're now waiting for the pulmonologist to see if Bob's going to get the trach out. I'll let you know as soon as we hear something.

Love and thanks,

Michele

Sunday afternoon update

Family and friends,

Bob is adjusting very well back at Bethesda. We've had tons of nurses come by to welcome him back both from the cancer wing as well as the ICU. (He's a very popular guy!) Bob is getting stronger every day, walking around the room with the help of the walker and setting daily goals. The oncologist confirmed that he is not bleeding in his stool which was fantastic and they feel that Bob is strong enough to have the trach out as early as tomorrow. They were unable to perform the bone marrow aspriation on Friday so Bob's doctor is going to do that first thing tomorrow morning. Bob is also eating like a horse which is great!! We'll know more what is going on by Wednesday as to whether he is going to stay here for treatment or go elsewhere.

I'll keep everyone posted.
Love and thanks,
Michele

Bob going back to Bethesda hospital today...

Family and friends,

Lots of news since the last blog. After speaking with the GI doctors from the Cleveland Clinic, it is their belief that Bob is no longer bleeding from his small bowel. After reading the pathology slides from the surgery that happened, they determined that Bob had small bowel ischemia, where there is a loss of blood to the intestine. They felt the ulcer could have been caused by the leukemia or the overuse of NSAIDS. They did not feel at this time that a double balloon enteroscopy would be beneficial to Bob and would do more harm than good and felt comfortable that he could successfully undergo chemotherapy at this time.

That being said, we spoke to both oncologists at the Cleveland Clinic and at Bethesda. They both agreed since Dr. The at Bethesda had all of Bob's records and had completed the initial bone marrow aspirations, that it should be continued at Bethesda. When the results come in, we'll take it from there. If he's still in remission and only needs the 3 day consolidation therapy we'll see if he wants to stay at Bethesda or go to Moffett center in Tampa, or if he has relapsed (which is a possiblity since he has missed his 2nd scheduled chemo by 30 days) then we would definately not keep him at Bethesda and he would go directly to Tampa for treatment. (Bob has decided to stay in state and not be transferred at this time to Boston as we had originally intended).

As Bob's friend Dave reminded me, this week has not been a loss. Bob can now walk with the aid of a walker, he has full mobility of his hands to the point where he texted me this morning, he can speak now with the aid of a passy muir valve much more cleary than before, he can use the bathroom, and he is getting stronger. This will continue to be our focus this week as we prepare for the chemo treatments he has ahead of him.

Thanks to everyone for their continued thoughts, prayers and support.

Love and thanks,
Michele

Decision time

Family and friends,

I spoke with the GI doctor this morning regarding the unsuccessfulness of the 3rd camera pill. They are going to be reviewing the pathology slides, the results from the 2nd camera pill that worked, and all of Bob's blood work over the past week to make a determination as to whether they want to proceed with the double balloon endoscopy or whether they believe Bob has stopped bleeding -if this is the case they will release Bob back to Bethesda tomorrow. At this point I told them whatever it is, they need to decide today because we've already lost a week that could have been used for giving him chemotherapy. The GI doc said he would call me back later today with a decision. In the meanwhile Bob continues to cough up blood although it is much less than yesterday. I will continue to follow up today with them until a decision has been made and let everyone know.

Love and thanks,

Michele

PS. Here is a photo of the team that hosted the "Pulling for Bob" powerlifting event last week. Again special thanks to both World Gym Power Performance team of Ft. Meyers and Southside Barbell. Thanks to all!

Very frustrated....

Family and friends,

Bob is still in the ICU. I just got through speaking with the GI doctor regarding the camera pill and another snag happened. Apparantly the camera pill cut off right after the it went through the area where Bob had previously had his intestines reattached. (10 days ago we confirmed with the 2nd camera pill that Bob was not bleeding at that site). This pill reconfirmed what we already knew but was unable to address if Bob was still bleeding a few feet below the site. Which was the whole reason we came to the Cleveland Clinic. I expressed my frustration to the doctor and re-explained the importance of something happening with regard to the GI bleed so that Bob can have his 2nd round of chemotherapy. The doctor assured me that he was going to consult with the rest of the GI doctors and that they would make a decision today whether or not they would proceed with the double balloon enteroscopy or move to operate. In the meanwhile, Bob continues to cough up blood but far less than yesterday and they are monitoring the situation closely.

Please keep Bob in your thoughts and prayers.

Love and thanks,
Michele

Bob rushed to ICU. Coughing blood.

Family and friends,

Bob had a big scare today after they inserted the camera pill. His blood pressure dropped to 70/35 and his heart rate skyrocketed. They think it could have been from the propophyl. The same drug that killed Michael Jackson. Then he started coughing up blood. They had to move him to the surgical icu unit. They won't let me stay with him so I'm at the hotel. When we left his blood pressure was stable at 118/64 and heartrate at 118. He is still coughing up lots of blood and they don't know the cause. They did 2 chest xrays and will do ct scan of stomach in a few hours. I'll update in the am.

Bob needs lots of prayers tonight.

Love and thanks,
Michele


-- Post From My iPhone

Camera pill postponed until today

Family and friends,

I know you must be sick of me talking about all these camera pills. But they postponed this until today. The reason according to Dave was that Bob was actually going to have to swallow 2 of them and he was going to have to sit upright in a chair for 11 hours. Bob hadn't seen the wound care specialist yet and so they decided to wait until today. Wound care finally came at 7:30 last night. They put a duoderm patch to cover Bob's wound and determined that he has a "Stage 3 wound which means it's eaten through all the skin and has exposed fat. Trust me, my heart goes out to Bob. It looks like it hurts, I can only imagine how it feels. Also yesterday they took the cathedar out of Bob which is good, and both Dave and the physical therapists had him up and walking with the walker.

They are bringing Bob down to the endoscopy area around 3pm so I'll report once we hear more. Bob's parents are also coming down because Bob has requested his mom make him some spaghetti. At least his appetite is coming back!

As always thanks for keeping Bob in your thoughts and prayers.
Love and thanks,
Michele

My birthday wish...

Family and friends,

As most of you know, today is my 35th birthday. (Thanks by the way for all the phone calls and emails!!) I spent yesterday with my family which was nice, and my mom and dad as well as Bob's parents came down to the Cleveland Clinic to see Bob. I think that made him very happy. Today they are doing the camera pill and it's really amazing to see how much he improves day by day. My biggest birthday present was Dave Tate, one of Bob's closest friends from elitefts.com he came down late last night and is going to watch over the nurses while I'm at work this week. That is going to be a huge help!

Bob's big PR yesterday was that he walked the length of the room without the nurses help and only the use of a walker. His physical therapy is getting better each time he does it - and now he's got Dave to work him out as well. We're still waiting on the wound care nurse to come and look at Bob's gaping wound on his backside. They promised me this morning they'd get on it. If they don't, they'll have Dave to contend with!!

I'll update more when I find out how the results of the camera pill went as well as the slides from pathology. Then we'll know how they're going to proceed with the bleed.

Love and thanks,
Michele

3rd camera pill Monday morning

Family and Friends,

After speaking with the GI doctors this morning, they determined that while they are waiting for the slides to come from Bethesda to look at the pathology, to be on the safe side they were going to repeat the camera pill. They want to make sure Bob is still bleeding enough to warrant surgery. Bob and I were both happy that they were being so proactive. Today was a much better day with the nurses too. The nurse has been giving Bob his pain medication on every even hour without having to be reminded (this is a huge plus in Bob's book), we finally got his air mattress delivered today (I had to call the nursing supervisor and it was delivered in 1o minutes) and Bob started physical therapy here. The woman kicked his butt. Today was the first day that Bob stood up and did exercises (holding on to the back of a chair). One of them was squatting. Could only squat 3 inches from knees locked (so hardly at all) but it's a start. (it was very hard for me not to start yelling "Back, back, back.. up!"- but I thought he'd get mad)

Anyhow, now we are waiting for the wound care nurse. That's the last person who hasn't come yet. I hope she comes soon.

They have decided to take Bob off all antibiotics and antifungals today.

Please keep Bob in your prayers. Thanks again for all the kind words of support.
Love and thanks,
Michele

So long for now Bethesda, hello Cleveland Clinic

Family and friends,

After waiting until 11pm last night to be transferred, Bob finally made it to the Cleveland Clinic in Weston. I followed behind the ambulance in my car. The EMT actually knew one of Bob's friends Charlie so it made for a smoother ride for Bob. After getting here I was amazed at how spacious the room was (it looks like Bob's staying in a hotel room) and how welcoming the night nurse was. She offered Bob some food and jello, gave me a bed to sleep on in his room, and we were seen by 2 of the internists last night. I gave them the run down of everything Bob had and they took blood and we slept until morning. I'd give our night nurse Laura a solid B+.

Then morning came and we got a new nurse. A guy named Patrick who seemed to be in training. Patrick got a "D" for Bob's care. I didn't want to come out with guns blasing today so that I'd get a reputation of being a pain, but everytime Bob needed something I had to ask 3 times. The internal medicine team rounded this morning, and I went over all of Bob's records again. My biggest concern was that Bob is getting NONE of the medicine he was getting at Bethesda. No protonics for ulcers, no blood pressure medicine, nothing. I told just about everyone who came in the room, and 12 hours later still nothing. I told them Bob needed a special air bed for the wound on his butt that has gone down to the fat layer, and even though the night nurse ordered it last night (It's 8pm now the next day) and Bob still hasn't received it. Patrick his nurse told us that beds are outsourced by a seperate company and that it could take up to 24 hours. Speaking of wound care, I told them yesterday he needed to be seen by a wound care specialist. No one came by, and I asked 3 times, so the nurses changed it. I harrassed them as much as I could but they said he'd have to wait until tomorrow. In addition, Bob had to have a CT scan done today of his abdomen. When he got back at 1pm he was starving. They didn't get him lunch. I had to ask Patrick 3 times to order it, and it took 2 hours. Although this is a very high tech hospital with really nice rooms, I don't see the personalized care that he had at Bethesda. I am hoping that I'm wrong since today is the first day, but we'll see.



In addition and more importantly the GI doctors stopped by. Bethesda didn't send over all the records so I had to spend the morning having to get them to fax pathology GI reports over here. Trust me, if I didn't do it, it wouldn't have gotten done until next week. The GI docs didn't want to make any decisions about how to proceed with Bob until they got them. So around 3pm they came by and we discussed. Unfortunately they said the pathology report was vague so they need to request the actual slides from Bethesda. This will probably take until Monday to get back, then their pathologist has to read it, then they have to decide how to proceed, so Bob will most likely not be having surgery until the middle of next week. For the good news the GI docs were really nice from the initial visit. They had their act together, they explained why they needed the pathology to make the best decision about Bob. That being said, they understood the need to stop the bleeding as quickly as possible in order for Bob to recieve the consoldation therapy as soon as we can. Speaking of chemo, the Oncologist came by and he was very nice. One strange thing he said was that this hospital doesn't have a dedicated oncology ward.

Bob's new night nurse just came in. Let's hope she's better than the day one. Hopefully she can get Bob his new bed. Keep your fingers crossed!

Love and thanks,
Michele

Both camera pills are out and Bob is moving today to Cleveland Clinic today

Family and Friends,

I'm sorry I didn't have a chance to update the blog yesterday but I had to work and make a million phone calls to help set up Bob's move to the Cleveland Clinic. Basically we are on standby until we get a phone call from the Cleveland Clinic letting us know a bed has opened in their ICU. They said once the doctor's make their rounds this am they will probably downgrade someone and Bob will be able to go. He wants me to ride in the ambulance with him, so as soon as I get the call I'm going to leave work and head over to Bethesda.

As you can see from the picture, Bob has finally passed the 2 camera pills that were hanging out in his stomach for the past week. They had given him some stool softeners and milk of magnesia and they came out. The bad thing was that stuff, compiled with the fact that Bob has just started to eat regular food, has caused Bob to go from slowly oozing blood to bleeding again. His platlets dropped last night down to 77,000. (Remember 2 weeks ago they were at 350,000).

Now for some great news. Bob was able to see his son Christopher yesterday, sit right next to him and talk. He was with Bob for about 30 minutes according to his grandmother. I went over to her house and ate dinner with Chris and asked him about seeing his dad. He said "it was good. Dad looks the same just skinnier". So it was great that he wasn't afraid, and I think that was the best motivation to get better that Bob could have gotten.

Also last night I was able to speak to the new GI doctor that will be taking care of Bob's intestinal bleeding. He called me at about 6:45 last night and we spoke for about 30 mintues. He was very open minded and honest with me about Bob's condition and we talked about options for Bob. They hope to evaluate him today and possibly do the double balloon enteroscopy tomorrow or surgery.

If you want me to be detailed, here it is: our first option is the double balloon enteroscopy. It does not require Bob to be cut open. It involves a balloon that is inflated and pushes against the wall of the intestine as it slinks itself downward. The problem is that Bob just had the first surgery only 3 weeks ago and if the balloon passes through that part where they cut and sewed there is a chance that it's not completely healed and he could rupture the area with the balloon. They usually want to wait 6-8 weeks before they would do this. The other option is to do surgery. What is sounded like is that they would open him back up, cut him where they did before, stick the camera directly into the intestine, look all the way down to the bottom this time (unlike his last surgery) fix and cut whatever they need to and then sew him back up and he'd stop bleeding for good. A little bit about Bob's new doctor: Subsequent to his current appointment, he was Regional Chief of Gastroenterology at Kaiser Permanente Ohio. After receiving his Bachelor of Medicine/Bachelor of Surgery in 1990, he completed his residency at Cleveland Clinic. His research and clinical interests include general gastroenterology, capsule endoscopy, double balloon enteroscopy, obscure GI bleeding, diagnostic and therapeutic endoscopy and diseases of the small bowel. He is the recipient of an array of academic awards, including the Dr. Sidney Garfield Physician of Excellence Award, a teaching award presented by the internal medicine residents at Case Western Reserve University Hospital in Cleveland, Ohio, and an Outstanding Senior Medical Resident Award from Cleveland Clinic. So it sounds like Bob's in good hands.

Okay back to him being transferred. The only way Bob was willing to go to the Cleveland Clinic was if he could go back to Bethesda for chemo. He wanted to be close to home and I can understand that. So yesterday Bethesda signed a letter of reciprocity (which I made sure to get a copy of) stating that Bob is going to the Cleveland Clinic to be treated for GI issues only and that once he is stable Bethesda will have 48 hours to take him back provided they have a bed for him.

That's all the news that's fit to print right now. Just waiting.

If I could say thank you to anyone today, it would be to Bob's nurse Emily. I really don't know how both myself or Bob would have pulled through without her kindness. Let me tell you I had to pull some strings to have her put on Bob's case full time, but she has made all the difference. It's amazing how going the extra mile can change someone's life for the better. Saying thank you doesn't even begin to cover it.

Please keep Bob in your prayers and thanks to everyone for their opinions they've been posting. I read them all!!

Lots of love and thanks,

Michele

Tentative move to the Cleveland Clinic

Family and friends,

Today was a very busy day for Bob. As I stayed home from work sick, Bob had his final swallow test that he did pretty well on. He Is now allowed to eat solid foods and drink thick liquids. He is not allowed water or gatorade unless it has a thickening agent in it. No ice cubes either. Bob had jello and a half of a hamburger as his first meal. He was glad they took the feeding tube out of his nose.

Now to the bigger picture stuff. The director of staff who was also Bobs surgeon, his oncologist and myself had a long talk. Bob is still bleeding according to the results of the pill endoscopy, and although the oncologist says it's imperative that we move to start the next round of chemo asap, she doesn't feel comfortable doing it until he stops bleeding. The surgeon said he didn't feel comfortable operating on Bob a second time and felt that Bob might best be served going to a facility that has a double balloon enteroscopy available because it is the least invasive next step. They gave me time to sit and talk it over with Bob and then I called his sister to discuss. We felt that the best choice right now was to keep him as close to home as possible, so the Cleveland Clinic in western ft lauderdale is the choice. It's our intention to transfer him there asap to have the procedure and as soon as he's stopped bleeding have him transferred back here to finish the chemo. Tomorrow we are going to start the ball rolling so that hopefully by thursday he can be moved. I pray that this is the right choice. I feel like it is.

Bob is very scared and rightfully so. He's got another battle to fight. Please keep him in your thoughts and prayers.

Love and thanks,
Michele
Ps. They did an xray today on bobs stomach. Both camera pills are stuck so they had to give him milk of magnesia and stool softeners in order to move them along. Hopefully he'll pass them tonight.


-- Post From My iPhone

I told them so.....

Family and friends,

I'm a lot a bit angry right now, so in order to calm myself down I'm going to talk about positive things first. Yesterday they removed the dialysis tube that was in Bob's neck. Basically the surgeon just yanked it out when Bob wasn't looking. No anesthesia or anything. Bob did really well. Secondly, the physical therapist came in today and got Bob to actually stand up and he's been sitting in a chair in his room for the last 4 hours. Finally, and Bob's most favorite, was that the speech therapist came back today and retested Bob on the swallowing of the green applesauce and water and he did great. No aspiration into the lungs. Tomorrow will be the final test where they do a video swallow exam where they follow the fluids (I guess on a CT or something) to ensure that they are not going into his lungs. Bob is very happy, excited, and optimistic today. Bob is obsessing with food right now, not the bigger picture - that's my obsession.

That being said, here's the part that I'm angry about. I had to stalk the GI doctor this morning. Called his office, called his nurse, called the nurse at the hospital, had him paged overhead etc... because he was supposed to read Bob's video capsule this morning. He FINALLY called me back at 1:30 and said "I've got some bad news, the capsule showed that Bob is still actively bleeding" (which I've been saying for the past 2 weeks!) and that the area that is bleeding is lower than the place where they had previously cut. (Remember how mad I was that they didn't look at the rest of the lower 15 feet of Bob's intestine?) Well, surprise surprise, that's where the bleed is coming from. Now I after I had the doctor admit 2 weeks ago that they didn't look at that part because they were sure that the part they cut out HAD to be the only spot, then they changed their story and said they couldn't go any farther because of risk of perforating the remaining 15 feet. So, if I believe their second story that they couldn't go any farther for risk of perforation, why would we let them try it again? The camera pill showed active bleeding, but couldn't determine if it was from a blood vessel, a tumor, or a ulcer. (I'm hoping ulcer since that's what he's been having). So now we have to make a decision. Do we let the original GI doc and surgeon cut him open again, or do we have him transferred to a hospital that is equipped to do a double balloon endoscopy (which has the ability to see the whole intestine all 30 feet). Now to make things worse, I spoke to Bob's oncologist for a long time today. Although Bob is in remission, the course of chemotherapy for Leukemia is 7 days initially (which he's already had), then 3 days of lesser chemotherapy on the 30th, 60th, 90th, and 120th day to ensure that all the Leukemia cells are killed. Now we've obviously missed the 30th day schedule. But the doctor is concerned that if we don't start the 3 day therapy soon, the leukemia could come back with a vengance and it would be much harder to get rid of the 2nd time around and he'd need to start back at the beginning with the stronger 7 day treatment. So it's imperative that we get the 3 day chemo started soon. No one wants to do the chemo though because he's actively bleeding. So we've got to fix the bleeding ASAP. That's why I'm so frustrated. Lots of big decisions to make and they have to be made quickly so we can get Bob not bleeding so he can start 3 day chemo. I encourage people to put comments below with their opinions.

One step forward, two steps back.

Please keep Bob in your prayers.
Love and thanks,
Michele

Green applesauce... the best Bob's ever had

Family and friends,

As we patiently await the results of the camera pill test to finally hopefully find out where Bob is mysteriously bleeding from, I thought I'd share what happened on Saturday with Bob and the speech therapist. The speech therapist on Friday gave Bob a Passy Valve which we can put over his traech that gives him the ability to speak, very hoarsely, but speak nonetheless. So Saturday she comes back and tells Bob that she's going to give him a swallow test to see if food or water will go into his stomach or aspirate into his lungs. Bob's eyes lit up like a kid at Christmas, he's been begging for any type of water or ice since he's been awake due to the soreness of his throat having the tubes in for the last 3 weeks. So much so that he's stop anybody that's walking by and ask them for a piece of ice. He'll ask every 5 minutes for 6 hours straight, and I joked with him that he reminds me of a crack head. Anyway, his prayers were answered. The speech therapist walked in with a glass of water and some applesauce, mixed it with green dye so she could see if it came out his traech, and he went to town on it smiling from ear to ear. My big concern was that Bob still has a severe lung infection and he's coughing up phlegm so forcefully out of the traech that it's shot across the room and stuck to the far wall (gross but accurate). And the pulmonologists main concern was that if he did have sugar and it got into his lungs he could restart growing the fungus that was in there before. As my role of patient advocate I felt is was my responsibility to tell the speech therapist what the pulmonologist said, and Bob said I was stealing his pleasure of eating. Be that as it may, I'd rather see him alive without a lung infection, then have instant gratification of green applesauce. So she only let Bob have 2 bites, but he said the green applesauce was the best he ever had! As she expected, he did expectorate it into his lungs and he coughed it out through the traech tube. She said he needed to practice speaking for the rest of the weekend so that his lungs and throat get stronger and that today she'd come back and test him again. Needless to say, Bob's new question became, "is the speech therapist coming back soon?" I got that question 10 times yesterday!!

Bob is alert and got to have a video conference call with Christopher yesterday. It went very well and it was fantastic to see him smiling. Just to let everyone know, yesterday I started reading every one's emails to Bob. Although I might not have time to write you all back, please know that I am reading all the emails myself and also now reading all the old ones everyone sent to Bob. Thank you again for all the kind words.

I'll write again as soon as I hear back from the GI doc on the source of Bob's bleeding (cross your fingers). If they can't pinpoint it, I'm not really sure what to do next.

Love and thanks,
Michele

Here's a photo

Family and friends,

I snuck out for a few hours while Bob was sleeping today to see a movie with my mom. We saw Julie and Julia. It got me thinking that this blog I'm writing, however helpful and descriptive, is missing something. Photos. Now Bob has been very clear that he doesn't want me taking photos of him and posting them and that he's not ready for visitors yet. But to make everyone happy I'm going to compromise. I won't post any photos of Bobs face, but I think most everything else is okay. So todays photo, although gross, is a picture of his foot. He's got severe adema which I've mentioned before but it's compounded by the worst dry skin I think I've ever seen. It doesn't help that he hasn't showered in 50 days or walked around. I try to lotion them up whenever I'm there. He also seems to like it because he thinks I'm giving him a foot rub. Whatever works. Let me know if you dig the photos or if they're TMI and I'll stop posting them.

Love and thanks,
Michele
Ps. Although Bob is getting better he still continues to bleed. Hopefully Monday we'll have some darn answers.

-- Post From My iPhone

Look who's talking!

Family and friends

Lots of positive thongs have been happening in the last 24 hours. The camera pill was a success however we won't have the results until Monday. Also Bob got a new valve for his traech so he's finally able to talk! He sounds very weak and hoarse but it's something! He has also started physical therapy on his arms and even sat at the edge of the bed on his own. By next week he should hopefully be eating and moved out of the ICU.

Thanks for all the prayers and support.
Love and thanks
Michele


-- Post From My iPhone

The squeaky wheel gets a 2nd camera pill...

Family and Friends,

I really think I've missed my calling, I should probably be a patient advocate or hospital adminstrator or something. After hounding all the doctors yesterday about the camera pill not working and them giving me a story about the GI doc being on vacation, somehow I got a hold of him and they set up a new pill for this morning. The doc said that the pill itself was a dud so I guess the sales rep for the pill gave them a free one. So the bottom line is the second pill got inserted this morning about 8:30 and all is well. Bob spent his first night last night off the ventilator and he did fantastic. His blood pressure and heart rate are good. He's just coughing up a heck of a lot of mucus from the yeast infection in his lungs. I'm not going to lie, it's pretty gross and I feel bad for him. But I can see that he's back to his old self finally. They are giving him atavan for the anxiety and they changed his antibiotics to see if that was affecting his platlet levels. He is watching ESPN, still can't talk, but is starting on day 2 of physical therapy. He's got a long road ahead of him, but it looks like he's made it over the hump.

Keep on praying for him.
Love and thanks,
Michele

Camera pill A BUST. no video taken

Family and friends,

The darn camera pill was a bust. I just got a call from the GI doc's assistant who said that no video was taken. Then I said, "okay, just give him another one" but she said the doctor was on vacation. Just Bob's luck. Now I'm trying to get someone to get him another one of these camera pills, and I want to get a CT scan or an xray or something to make sure it isn't stuck inside of him. (he hasn't passed the pill yet). So needless to say it's been a pretty messed up day. They wanted to switch him from the IV fluids to feeding him from the tube in his nose, but they can't now until they get results letting them know Bob isn't bleeding anymore.

Please keep Bob in your thoughts and I will update when I know more.
Love and thanks,
Michele

No results from camera pill as of yet

Family and friends,

So sorry I didn't have a chance to write yesterday, but things were very hectic. The good news was that Bob was the first person ever in the history of Bethesda hospital to get a pill endoscopy. Everything went well, and I am awaiting the results from the GI doctor sometime this morning to find out where the heck he's still slowly oozing blood from. Bob has significantly decreased the amount of bloody stool he is producing so they are going to take the tube out today. The bad news is that he is still somehow bleeding. His blood went down to 7.9 and they are giving him 2 more pints of blood today. He is very alert and aware which is a fantastic thing, however now he has lots of questions and and is getting very anxious. He still is battling lung issues which causes him to have a lot of mucus and when he is on the ventilator it is very hard for him to cough it up. They took him off the ventilator yesterday for 6 hours and he did really well. It helped him cough up a lot of stuff, but it also made his stomach and back sore from all the coughing. This morning while I was there he panicked on the ventilator because it felt like he was choking. The infectious disease doctor says he is getting better every day and took him off a few antibiotics. He also starts physical therapy today as well. I will blog again when I find out the results from the camera pill.

Thanks for keeping Bob in your thoughts and prayers.
Love and thanks,
Michele

Tuesday Afternoon, still no blood loss!

Family and friends,

It's Tuesday afternoon and knock on wood, Bob still hasn't lost any blood. I spoke with the pulminologist this morning as well as the infectious disease doctor and they both said Bob was heading in the right direction. A few minutes ago I finally tracked down Bob's GI doc and we set up the camera pill for his intestines for Wednesday morning. It should take 12 hours to get through him and then they'll have video. Even if it doesn't show active bleeding, it can at least show them possible trouble spots for the next round of consolidation chemotherapy that he'll need in a month or so (he's still in remission but they do a short round of chemo as a precaution). As soon as the camera pill is done they'll start weening him from the ventilator and hopefully he'll be breathing on his own by Sunday. He'll still have the traech in for a month or so until he's fully healed. Finally, we are hoping that Bob and his son Christopher can be reunited soon. Christopher has been anxious to see his dad and I know seeing Chris would really lift Bob's spirits. Hopefully we can get that done this weekend too.

I just wanted to say thank you to everyone who has been sending me emails. I promise that I have read each and every one of them and unfortunately because I'm working full time and going back and forth from the hospital 3 times a day and keeping up with the blog I just don't have the time to write everyone back. But I am reading them all and I appreciate all the kind words and prayers everyone is sending!! THANK YOU AGAIN!!
Michele

Monday Morning miracle????

Family and friends,

The last time I wrote was Saturday night. At that time Bob's blood count dropped into the high 6's range, his bp was in the 190's and they were going to start giving him new drugs for clotting and blood pressure. Apparantly all the stars aligned for Bob and everything seemed to work. During the night on Saturday they gave Bob 2 units of blood and 2 units of plasma and retook his blood counts Sunday morning. His blood counts jumped from 6.8 to 8.5. Although that was a big improvement, I was cautiously optomistic. They didn't give Bob any blood during the day yesterday and his counts remained at 8.5. I was still cautiously optomistic about the clotting drug Amacar. They didn't give Bob any blood last night, and his blood counts went up on their own to 8.8, platlets rose to 92,000 and white blood in the 8's as well. In addition, Bob's blood pressure returned to the 130's as of last night and when they did a chest xray, for the very first time in the last 3 weeks it's come out normal. It looked like his pnumonia is gone as well. Everything is looking up for Bob today! When we saw him yesterday he was very alert, wanted to know what the game plan was, and did lots of excercises trying to move his hands and feet. Don't get me wrong, Bob still has severe adema in his hands and feet and his range of motion is very minimal (he can't lift his hands and feet much, still can't hold a pencil) but he's trying and making a huge effort. If he continues on this path, he should be off the breathing machine within a week! Thanks to everyone for their prayers and well wishes for Bob, they seem to be working!

Love and thanks,
Michele

Bob awake, but blood pressure too high

Family and friends,

Today when I went to visit Bob he was significantly more awake and trying to mouth words to me. He is able to lift his hands if ever so briefly and wiggle his toes. I know that might not seem much, but it's a huge improvement. His mom was able to see him for the first time in a week because she's been battling a bout of bronchitis and with her previous leukemia and the fact that Bob still has c.diff infection they thought it wouldn't be safe before.

Here was the problem today. He was most likely still confused as to where he was and trying to deal with the pain of his stomach surgery, the bleeding, and the fact that he has a traech tube in his throat. He kept asking for water and powerade but the nurses feared any fluids could restart the fungus that was previously growing in his lungs, or the necrotizing pneumonia, or that he could aspirate so they only allowed him a few ice chips. He was frustrated and his blood pressure went skyrocketing. They tried to give him a labedlal drip for the blood pressure, but it didn't work too well, then they moved on to some patch that was supposed to help, but it was sporadic at best. Bob's blood pressure got to the point of 193/95 and Aunt April, Uncle Tom, and I decided it would be best to leave so he could get some rest. At that point they had to call a cardiologist because nothing was working. In addition, the weekend oncologist decided to give him a blood clotting medicine in hopes of trying to stop the bleeding, because the higher his blood pressure, the more he would bleed. The clotting medicine is called Amacar. It is used to treat excessive postoperative bleeding, however its side effects are mainly related to the gastrointestinal tract and include nausea, vomiting, abdominal pain, and diarrhea. Unfortunately it didn't seem to help much.

I was fortunate enough for the day nurses to let me help clean Bob after one of his bleeding episodes. Although it was hard to look at, I realized why they had to insert a tube into his colon. His backside looked like ground up meat, a combination of what looked like rotting open wounds and bed sores. It's probably the grossest thing I've ever seen and my heart broke for him. Although the nurses cover it with paste and tried to have him sit up today, I asked them if they could get a wound care person in there to treat it asap. The wound care person won't get there until Monday.

Dammit! I just got off the phone with the nurse like 2 seconds ago. Because of his high blood pressure his red blood hemoglobin plummeted to 6.8 and his white blood down to 5.9 (at least this is still in range). His platelets are low too at 91,000. The good news was the the cardiologist put him on a brevibloc drip just now and his blood pressure is in the 140's. I'm hoping this slows the bleeding during the night. They are giving him 2 more units of blood and will retest at 4am. I'll keep everyone updated. In the meanwhile please say a prayer for him. He's awake and he's fighting. He's trying to get his strength back. He mouthed that he loved me today and that made all the difference in the world to me. I have hope that he's going to pull through.

Love and thanks,
Michele