What a Glorious Day!

Well a lot has happened since my last blog. 

Thanks to Ed Roden for blogging for me yesterday.

First and foremost, Tracy is Miraculously improved!  I really hadn’t seen her since March 22^nd until today.  As the doctors still did not want me to see her on Monday because of I still flu symptoms, even though I didn’t have a fever. 

I left Monday night for home amidst talks of discharging Tracy, which frustrated me to no end, as no one had mentioned anything to me.   Luckily for me Deb Paquet was going to spend the night with Tracy and leave early Tuesday afternoon, so I was able to go home.  The plan was for the doctor and I to meet and talk to straighten things out on Tuesday.

Tuesday was a packed day for me and didn’t leave home until about 3:45PM.  Three stops and forgotten suitcase (the only one, with my CPAP and my medications in it so I had to return to get), I got to Ann Arbor just after 7PM.   As I approached Ann Arbor I spoke with the doctor on the phone, as I was not able meet with him.  I then rushed to Tracy room and found her awake and talkative. 

Tuesday night was like a date night for us!  We talked and laughed for about a half an hour and then I asked her if see would like to watch NCIS.  She said yes and I then asked her if she could name any of the characters.  Tracy said, “Yes, do you mean their real names or show names?”  I was floored; we watched the entire show together and then talked for another 45 minutes or so until she fell asleep.  I waited for the nurse to return to give me Tracy’s weight from the previous two mornings.  But finally gave up around 10:30 when I found out she had a new admit and that was why she hadn’t returned.

When I finally went to bed, I noticed how load the neighbors were.  I think they woke me up every hour on the hour.  About 4AM I figured it out, the room was a shared room with an hourly rotation.   I think they were rotating staying with someone in the hospital every hour.  However every other hour had a woman that returned with the loudest voice on earth and she never slept, just talked and talked and talked.   I wish I had called the front desk to complain.  Luckily, they checked out!

I returned this morning to find Tracy fast asleep still.  So I left and did some work for a couple of hours.

When I returned, she was awake and we talked the afternoon away.   She would ask the nurses and I questions and later on doctor too!  I would answer them and then she would be off to another topic.  Her short-term memory is not the best, but she can pull some old memories out and talk out them.   I sometimes have to help her with them, but she can do it on her own too.  I have learned, thanks to the physical therapist, that sometimes Tracy can only process one thing at a time.  So if you ask her a question and she doesn’t respond immediately, wait at least a minute before asking her again or something else.  When we do this she seems to be able to come up with the answer or complete the task you asked of her.

As I tired from the day, I told Tracy that I was going to leave and get something to eat and get some else to wear, as I was cold.   Her answer to me was why don’t you just get something out of the kitchen and put a jacket on.  She never missed a beat!  That is similar to a lot of our conversations, a very appropriate answer, just not the right one for that particular moment.  I think it is a short-term memory thing that comes and goes, but it is just a connecting the dots type of thing for her.

Below is a very touching picture from Linda Heimer’s grandson Patrick, which he drew at school of Tracy in the hospital.  He was asked to draw something he had prayed for.  Wow! 

Thanks Patrick!

I am exhausted, I think that flu bug really hit me hard or time is catching up on me.  I am not sure which it is.

But what I do know is that God is Faithful and I am so thankful for Him and Tracy!

God Bless and “Never Give Up… Never Ever Give Up!”

Rob    

Update March 27

This isn't Rob, but I just got off the phone with him.


On Monday, Tracy had what Rob said was probably her best day since all of this started - little things like recognizing Chuck Gaidica and reacting to commercials. Her treatment schedule is on track with the 5 day treatments and Rituxan treatments.


Unfortunately for Rob, he has been fighting the flu and flu symptoms since last week and has been unable to spend much time with her.


The other downside is that they are talking about discharging her again to a rehab facility. Unfortunately, the treatments require her to be at UofM while they are administered, which means staying in the Ann Arbor area, and would require ambulance transportation back and forth. Rob wants to make sure that the team of Drs. see this through. He has several meetings over the next couple of days to work through these issues with the team.


So here is the request (beyond praying like we have been): 

Can any of you spare a couple of hours Wednesday and Thursday to go and visit with Tracy while Rob deals with the other issues?

God Bless and “Never Give Up… Never Ever Give Up!”

It’s a New Day, But been a rough 3 or 4

Well I finally was able to proofread my last blog, so sorry for all the errors. 

Dr. Berg confirmed it Friday morning that I had the flu.  I had gotten a flu shot early on in our journey, but doc said that there was a flu going around on Tracy’s unit that was not affected by the vaccine.  Lucky me. 

I last saw Tracy Friday morning as Dr. Berg prescribed Tracy and I both Tamiflu.  Don’t worry I had been wearing a mask from the time I entered her unit and before I entered her room and sanitized my hands.  I left her with tears flowing as I knew it would be sometime before I would see her again and she was scheduled to have the Rituxan treatment later that day and the doctor had told me I couldn’t see her until a day after my temperature had returned to normal.  I so desperately wanted to be with her as I had always been for her treatments.

Dr. Berg straightened out all the confusion from the night before and was fully in control, I should have figured he would be.  (I would have know this, had my Verizon phone worked correctly Thursday night)  Now we just had to make sure that the Tamiflu didn’t interfere with the Rituxan. 

When I left Tracy’s room I went directly to the pharmacy to get my prescription and to pick up some fruit.  By the time I got back Tracy had already received her Tamiflu also and was scheduled to get the Rituxan around 3PM.  Which she did and all went well, she handled it like a champ without any interruptions.  Her previous treatment back in November had to be slowed down once due to an elevated temperature, but not this time!

I had to call Drew and tell him not to come out, as I didn’t want to expose him to the flu.  Needless to say, Friday was not a good day.

Saturday was not any better, except for Tracy’s visitors.  Patti Crowe and Ann Marie Collins along with Drew came out.  So Tracy had pretty much around the clock visitors.  Patti came in the morning and Ann Marie came in the late afternoon. Thanks so much ladies!  Drew showed up shortly after Patti left and left shortly after Anne Marie left.  We decided that it would be best if Drew got his own room for the night, so we booked him in another hotel, as there was no room in the inn, here.  We got back from his hotel around 7:30 and he went to see Tracy and he said that she was sound asleep.  So he went and got some dinner from the cafeteria and met me in the lobby of the Med Inn to watch basketball.  After the game we called to see how Trace was and the nurse said that she was still asleep.  So Drew headed to his hotel and I to my room.

I woke up Sunday morning and called to see how Tracy had done Saturday night and they said that she had a very good night.  So, I went back to sleep only to be woke up by Drew about 10AM saying he had just woke up and would be over after he finished his homework.  I slept for a while longer, then got up and showered.  Funny how a hot shower always makes you feel better.  Drew got to the hospital around 1PM and went directly to Tracy’s room and visited with her till around 4:00.  When he met me in the courtyard as I had gone out for some fresh air and to meet a new friend.

My new friend reminded me of my old friend Chirpy that I had for four years as child, although Chirpy was a Golden Mantle Chipmunk and probably about three times as big as my new friend.

We left shortly there after for Maize N Blue, our favorite deli.  He left for home around 5:45.  I returned to my room to watch the last of the Elite Eight games.  Just a side note here I have 3 of the 4 final four teams (thanks Michigan State!).

My last call around 7:00PM to the nurse’s station found Tracy sleeping soundly and doing well. 

If all goes well I will be able to see My Girl tomorrow morning!

God Bless and “Never Give Up… Never Ever Give Up!”

Rob

It has been a crazy week to say the least

Prior to tonight I would have told you to disregard my last blog.  However I have said multiple times the more things change the more the stay the same!

I am beyond frustrated with the U of M and Verizon.

I was told by Dr. Berg to disregard the previous report from neurology late Monday night.  He then became our attending doctor.  Tracy also finished up a lengthy dose of IVIG early Tuesday morning.  Tuesday if you remember I had a dentist appointment back in Troy and because of the late IVIG Dose I only got a couple of hours of Tracy being awake.  She seemed to be doing well and I was able to spend another 3 or 4 hours with her after I got back.

Wednesday day was an awesome day.  Tracy stood in a machine with occupational and physical therapy for 20 minutes!  Praise God!  However immediately after the therapy she slept until about 6PM.  This was another answer to prayer as I spent 4-5 hours between the IRS and Huntington Bank, trying to make a payroll tax payment that was due the 21^st.  Finally about 4:45PM I got the wire to go through.  It should not have been that difficult!

About 8:30 last night I got to spend about an hour and half in conversations with Tracy!  She even told me our home address and talked about cities nearby.  I was in Heaven and praising God!  Yesterday we also finally got her Ativan lowered to 3mg per day, one every 8 hours.  Another Amen!  Dr. Berg finally was able to talk to Mayo on Wednesday also.  They recommended that we add a second treatment to Trace’s current treatment.  They gave a couple of suggestions but would not make an exact recommendation as Tracy is not there patient. 

I hadn’t eaten since about 2PM, so I walked over to Jimmy John’s for a sandwich and some  exercise about 11PM.  It was so nice out I wore shorts and polo, another thing to be thankful for.

Thursday started kind of slow as Tracy I think was getting use to her lowered Ativan.  When I arrived about 9:30AM they were getting ready to the same PT treatment as the day before.  However Tracy was not as cooperative.  We believe this was also due to the lowered Ativan.  They had Tracy sit up in bed for approximately 20-30 minutes and picking up objects and giving them to the therapists.  Again Tracy was exhausted, and went to quickly to sleep.

This afternoon there was a lymphoma meeting with one of the leading Neuro-lymphoma specialists in the world and about 6:30PM I had two hematology doctors telling me that it was a very good and productive meeting and that there were 15-20 doctors attending.  It was decided that the best treatment for Trace would be to continue the IVIG, which we had figured, and start another Rituxan treatment.  As they felt that it had nothing to do with Tracy condition back home.  The asked me to give them the ok to start the new treatment Friday.  They told me that Dr. Berg was on board and they were surprised that he hadn’t been by.

A little after 8PM I called from the hotel and I gave them the ok to start the Rituxan treatment Friday. 

It was about this time that I started getting chills and crawled into bed.  Tracy was asleep when I left and left instructions to call me if she woke up as do not like to leave her alone when she is awake.  Remember, “it’s boring here, I am bored.”  I slept off and on until about 9:45, when I woke up called to see how she was doing.  I was put on hold for 20 minutes, I don’t understand why someone couldn’t say, tell him I will call him back or tell him to call in 10 minutes.  So I bundled up, checked my cell phone, only to see that it was not working correctly and rebooted it.  When it came back on there was an email from Dr. Berg from 8:18 telling me basically everything the other doctors had said but that he would talk to me in the morning about proceeding with Tracy’s treatment leading me to believe that he did not want to start treatment tomorrow.  Confused and spitting mad at Verizon as this phone has not worked consistently since I got it and they have been trying to rectify it.  If you don’t have to use Verizon don’t.  They admitted to me tonight after 4 or 5 calls to them that there are some problems with the Samsung Galaxy.  Just like the Droid Razor they sold me in November and replaced with this one! 

As I got off the elevator at the hospital to see how Trace was doing was when I finally got the email mentioned above.  I read it as walked to her room becoming more frustrated with every step.  When I reached Tracy’s room the nurse was there to tell me she just tried to call me and that Trace was fine had been sleeping but just woke up.  I masked up and went in told her that I loved her and that I would be back.

Bottom line is, I do not know if Tracy will be receiving a treatment tomorrow or not, as I approved it but there is no order for it.

I am feeling better now, the chills are gone and I have a backache and a headache. 

Please pray for the doctors, as I am so confused as to what is going on and no one is here to answer my questions.  Also, pray for Tracy as she continues to improve and for her impending treatments.

God Bless and “Never Give Up… Never Ever Give Up!”

Rob

ps. I will proofread this later it’s late and I’m headed to bed.

Sunday March 18th

Well it's March Madness time again.  While I won't say it's madness in the Bowden family, there seems to be a lot of craziness.  

If you have been following closely Tracy's 2nd round of treatment has been going kind of crazy.  Wednesday night was dose #1 of her second treatment of IVIG and we never got it completed.  About 2:30 AM they decided that Tracy's blood pressure was too low to complete the treatment.  So they resumed her treatment Thursday afternoon amidst one of the most severe thunderstorms I have ever seen.  Those of you from outside of Michigan may or may not have heard about the tornado in Dexter Michigan, but it was only 10 miles away and reports were that it was headed right for us here at the hospital.  So all of the patients were moved into the hallways to get away from the windows.  We were in the hallway for almost two hours before we got the all clear.  Tracy finally finished her first IVIG dose around 11PM.

Friday was a very good day for Tracy.  She was very alert and conversational.  It was such a beautiful day here that I ate lunch outside in the courtyard.  That evening right before we started dose #2, the doctor came in told me that Mayo had contacted her and told her that they were still waiting on one more test result.  But that they had changed their mind on the paraneoplastic syndrome, as Tracy's numbers were not to far out of range to be completely positive (.02 is normal and Trace was .04).  However since the IVIG treatment had worked so well the first time they agreed with continuing the 2nd dose that we had already started.

Drew showed up around 8PM Friday night shortly after they started Tracy's second treatment.  Dosage #2 didn't start so well, Tracy's blood pressure was fluctuating a lot but not too low, so they kept the dosage down and trudged on.  At the rate they were administering the IVIG it was going to take 24 hours to complete the treatment.  But about midnight they were able to double her dosage and about 2AM they were able to raise it another 50%.  The nurse administering it said that she would spend the rest of the night in Trace's room and that I could go to bed.  So I did.

Saturday morning I woke up at my customary 6:15AM, to call and check to see how Trace was doing.  Darlene, the nurse who spent the night with her, said that it had been a good night and that she had been able to increase the dosage so that Trace would be finishing up her dosage around 7AM.  Relieved at hearing this I went back to sleep.

Drew got up before me and had his stuffed hash brown’s and then went to Tracy's room.  It was one of his best visits with her.  He was able to talk to about his schoolwork and his induction into the National Honor Society.  Now a little bragging, Drew is on track to a very successful 2nd semester at school.  So it was good for Tracy to hear it from him.

Dosage #3 started late also.  I just don't understand why they start it so late.  I believe that anyone's blood pressure would drop during the evening and nighttime hours.  I think they should start the dose around noon or a little earlier and or at least start at the beginning of the 3PM shift change so that the same nurse can follow it through.  Tracy’s blood pressure bounced around again but, around midnight Tracy started to tolerate the dose fairly well, so Drew and I left for bed.

Today was another good day for Tracy.  She was not a cognizant as Saturday but so much more alert.  At times she would even read notes on the wall and was able to correctly identify her flashcards. 

Below is a picture of Tracy's room and my room.  

If I could tightrope walk it would be less than 100 yards.

As I close this blog, Tracy is receiving dosage #4 and is tolerating it very nicely.  If all goes right she should be through around midnight.  

Once last thing.  I need to ask a favor of someone.  I do not like to leave Trace alone while she is awake and I need to leave Tuesday afternoon for a dentist's appointment back in Rochester.  So if anyone is available to sit with her Tuesday afternoon in to the evening, I would be so grateful.  To put it in Tracy's actual words, "this place is boring".  I hope it is the hospital and not I!

God Bless and "Never Give Up... Never Ever Give Up!"

Rob

Thanks for the prayers!

Tracy's blood pressure came up Thursday morning and the treatment was started about 2PM.

All in all, it was a great day!  Tracy was very conversational and also quite the trooper.  We had tornado warnings, and last report was that there was extensive damage in the Dexter area from one.  Dexter is just a few miles away from the hospital.

During the warning all the patients in the hospital were moved from there rooms into the hallway for approximately two hours.

Tracy also was counting to three for the nurse's tonight, as they turned her from side to side.

Thanks again for your continued prayers.

God Bless and "Never Give Up... Never Ever Give Up!"
Rob, Go Hoosiers!

IVIG Treatment

They started Tracy's treatment twice last night but we're unable to complete it due to low blood pressure.  It is still low this morning and the have just started an fluid IV to try to increase it.

Please pray for her blood pressure to go up so they can resume the treatments.

God Bless and "Never Give Up... Never Ever Give Up!"

Rob

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An Update, Apologies, and many Thanks

Tracy is continuing to improve, albeit it slowly.  Thanks be to God and the U of M and Mayo Clinic staffs.

In case I wasn’t clear enough in last week’s blog, we have a diagnosis!  It is paraneoplastic syndrome, a type of autoimmune disease.  The Mayo Clinic is the one that came up with the diagnosis and continues to do testing.  While we wait for Mayo, the U of M staff has decided to give Tracy a second round of IVIG treatments, since the first was so successful.  Tracy is currently receiving her 1^st dose as I write.

Now for the thanks and some more apologies. 

I am sorry I have not updated you in awhile.  We have been pretty much in a holding pattern for the last week as we wait on Mayo continued testing and treatment recommendations.  I guess I should have at least posted that we had no new news and that Trace was doing well.  Sorry.

I went out last Wednesday night with my good friends Steve Maniaci, Bob Tremonti and Brothers Joseph (Glenn & Lennie).  It is always good to see friends, thanks again guys!

Drew came out for the weekend as usual and it is always the high point for me.  He and I left late Sunday afternoon, for Woodside Detroit, our church’s Detroit campus.  It’s such a comfort to worship God there.

We got home around 8PM and preceded to fix Drew’s truck; luckily it went quickly thanks to Drew’s help.

I then left to attend the viewing of Casper Maniaci, my friends Steve Maniaci’s brother, who passed away last Thursday.  Sorry I didn’t update you on Casper’s status, as I asked you for prayers for him and his family last week.  Please continue to pray for the Maniaci family.

Thanks to Lisa Harrison, I was able to spend Sunday night in Troy, and as she said “she got to spend some quality time with Sophie”, her daughter that attends the University of Michigan.  Thanks again Lisa.

Tracy’s parents are up this week helping me, while I tend to work and personal matters.  Jay and Kay have been a great comfort and also source of meals for me.  They have allowed me time away while they stay with Trace.  Thanks Jay and Kay.  Please pray for their safe return home Thursday. 

Tuesday was Casper’s funeral, thanks again for your continued prayers for the Maniaci family. 

Tuesday was also my first day since October that I was back in the office.  It was good to be there.  Many of you have been concerned about our business and it is doing well thanks to our employees are doing a great job.  A better economy sure would make things much easier, but I need to be careful of what I ask for.

Now for some over due, but very heart felt thanks. 

Thank you to all of you who have paid for nights here at the Med Inn.  Your generosity has been overwhelming.  I have received over 8 weeks of overnight stays thanks to you!  I have been asked by many not mention your names, so I won’t, but you know who are.  Thank You so much!

Thanks also to all of you have made dinners for Drew.  There is no way I would have ever been able to be the advocate that Tracy needed, if you hadn’t fed Drew the way you have.  You wonderful people have been feeding our son for almost 4 months!  The multi-course meals you have made him have made me jealous (by the way Takethemameal.com is back up).  Thank You too!

Now thanks for the biggest and best thing you have been doing for us.  Thank you for your continued prayers for my family and friends.  I know that we would have never made it this far without Grace of God and your prayers.

I am eternally grateful for all of you!  As I have said before, you are the hands and feet of Christ!

God Bless all of You and “Never Give Up… Never Ever Give Up!”

Rob

God is Good!

Sorry this blog never posted.  It was written Tuesday night.

Just a quick blog, in case you haven't

seen Facebook or twitter. WE HAVE A DIAGNOSIS! The treatment has yet to be determined. But the test results from Mayo are positive for paraneoplastic syndrome. They are doing some more testing to try to help determine the best treatment.

God Bless and "Never Give Up... Never Ever Give Up!"

Rob

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Deja Vu Day

Well the more things change, the more they stay the same.

We have a diagnosis and now we wait for a treatment.  Because of the diagnosis of paraneoplastic syndrome, I am sitting once again in the nuclear medicine department.  They even recognized us as we came in. 

We are waiting for a PET scan, to recheck for the lymphoma that Tracy was originally diagnosed with.  They want to recheck Tracy make to help determine the appropriate treatment, as paraneoplastic syndrome is the result of cancer.  So we will wait again for results.

Now prior to this test, Tracy had her G tube replaced as she had pulled hers out earlier this morning. As we arrived in radiology, one of the nurses said I remember you. 

It is nice to be remembered everywhere you go, but I would much rather be remembered somewhere else.

Tracy has had some visitors this week too. Deann Rohloff visited Thursday and today Cassie Immick, Linda Longo and Karen Wesley came for the morning.

Well as I titled the blog today, it's been a deja vu type of day.

God Bless and "Never Give Up... Never Ever Give Up!"

Rob

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Todays Blog is brought you by the Colors, Yellow and Purple and the Numbers 2 and 4.

Tonight I sit again by Tracy’s bedside; I have spent 24 of the last 26 hours in her room.  I know how these episodes or attacks affect Trace.  Dr. Berg and the nurses have assured me that she will be fine, but it is hard to leave her side.

Dr. Berg told me today that he believes his work is cut out for him.  He believes that the lymphoma that Tracy had or has is causing a paraneoplastic syndrome, in which the cancer causes the bodies antibodies to attack the brain and nervous system.  He thinks that maybe the b cell follicular lymphoma is not gone and is continuing to cause Tracy’s symptoms.  Tracy’s cognizant times are intermittent and he needs hematology and neurology to see Trace during one of these times.  If they don’t catch Trace during one of these times, it will be up to him, Tracy’s history and the nurse’s notes, (which have been good) to convince them to get on board with him.

Now this is important!  I told him that we are very strong Christians and that we have a lot of people praying for Tracy and that I would write in Tracy’s blog asking these same people to pray for him as he talks with these other doctors.  He thanked me and said that it would help.  So I am asking all of you who are praying for us and even those who have told me they would but were not sure God would listen (let me remind you, if you call upon His name, He listens), to pray for Dr. Berg and hematology and neurology teams to have wisdom, clarity and patience as they treat and evaluate Tracy.

Also say a prayer for Drew as he is not feeling well tonight and has his ACT examination for college acceptance tomorrow.

While we are on the prayer request topic, please pray for one of my best friends, Steve Maniaci, brother Casper and his family.  Casper is currently on life support after suffering from heart failure over the weekend.

During Tracy’s occupational therapy today (our OT therapist is Kristen Clore, and we love her) Kristen said that when she came in she said hello to Tracy, she stuck her hand out to shake Tracy’s hand and Trace grabbed it, shook it and said hello to her!  If that wasn’t enough, Kristen then held up two fingers and asked Trace how many fingers, “two” was her answer!  If that wasn’t impressive enough, Kristen then held up four fingers and asked how many again.  Tracy responded “four”!  

Kristen then grabbed a stuffed caterpillar (we call it “The Hungry Caterpillar” as this was one of Drew’s favorite books as a child) that is multicolored and pointed to its head and asked what color it was.  Tracy responded with “yellow” which it was!!  She then pointed to its tail and asked what color it was.  Tracy responded this time “purple”, another correct answer!!!   Then she pointed to it’s green midsection and what color it was.  This time Tracy pondered and then said she didn’t know. 

Hey 5 out of 6 is pretty good!  Actually it’s impressive!!

Also as Dr. Berg left this afternoon he said see you tomorrow to Tracy and she responded “Thank you” to him. Later on in the evening we got a new nurse, Martha who introduced herself to Tracy and Tracy responded “Tracy Bowden, nice to meet you”

I think you know now that I smiled a lot today.

Other than that Tracy slept the day away, which Dr. Berg said he thought was appropriate given all the stimuli and day Trace had yesterday.

I read to Tracy everyday and the last few days she has been very attentive to my readings.

It is now 9:30PM and must close for now.

God Bless and “Never Give Up… Never Ever Give Up!”

Rob