MAYO Clinic-Day 3

Once again, y'all are Rockstar prayer warriors...

Today was a pretty good day.  We started with being able to get my EEG done this morning, rather than this afternoon.  This will hopefully allow the doc more time to read it and it opened up the afternoon to accomplish more...

Then, we met with the autonomic specialist, the guy that deals with POTS.  This was my least favorite appointment.  He was quite rude and asked me to, "prove it," many times in our meeting.  This was in reference to diagnoses that we have received from other docs.  Anyway, he had me in tears and I asked him to please stop treating me the way he was...he didn't.  So, I left the room.  Ben stayed in with him for the next hour and a half and shared my medical history.  Basically, he didn't believe everything that we were saying that is so rare...he didn't read my file before he came in the room.  Every other doctor has spent over an hour reading my records.  Once B told him that we had exhausted every option in Texas and that even our docs in Texas said that they had never seen a case like this, he apparently changed his tune and started listening.  Then, he read through my chart with Ben and things he had disagreed with me on...he read written in my chart and seemed to understand finally.  His excuse to Ben about his attitude is that he is "a New Yorker..."

We left there and I had an echocardiogram done.  They can't use the ultrasound gel on me because it triggers the seizures.  So, we had to get creative.  She actually got a cup of water and gave me a bunch of gauze.  I literally laid there squeezing water on to my chest the whole time she did the scan.  It was interesting, but it worked!!!!

Then, I had my MRI done...we met a sweet couple while waiting to be called back for the test.  While I was in the test, B was able to get a little work done.  Then, he had a chance to speak with this wife.  Please be in prayer for them, Diane & Doug.  He has been diagnosed with Lou Gehrig's disease.  They are hoping it is an inaccurate diagnosis.  She is also a cancer survivor like B!  So, it was a special connection!  Please keep them in your prayers!

Then, we went to each of the appts. that I have scheduled for the rest of the week and tried to rearrange them so that we can leave on time Friday.  The praise is that we were able to move my appt. with the cardiologist next week, to an appt. tomorrow morning!!!!  So, now, the only appt. that is out of the way, is the neuro on July 15th!  We are hoping to get that changed tomorrow.  Otherwise, we will need to fly back up here for that appt.

We met a precious family here through one of B's clients.  The hubby works at Mayo and they have been precious to offer anything that we might need.  We were running low on lettuce for my salads and she went to the grocery store for us and not only blessed us with lettuce, but she also bought some yummy snacks for B and she brought me a rose. : )  Her oldest son (12 years old) was with her and he was such an impressive young man!!!

Finally, we decided to go sit outside the hotel and rest.  On our way out, B stopped in the coffee shop here.  A guy walked up behind us and said that B looked familiar and asked for his name.  Turns out they were in the Corps together!!!  There sure are a lot of Aggies in Rochester.  Anyway, he is doing his residency here and so we got to catch up with him, too!  Such a small world!

Now, we need to get to sleep since we only slept four hours last night b/c of my EEG.

Please be praying for:

• Our appointments to flow smoothly tomorrow.
• For our disc to arrive from Houston
• That the neuro will have time to view the disc & see us before we leave town on Friday.  It would be great to not have to come back up here in two weeks.
• We have one appt. that we are trying to get moved from Friday afternoon to tomorrow or Friday morning!  
• That the docs will be able to uncover the cause or a solution to all of this.
• That our sweet baby will continue growing into a healthy little baby!!
• That we will be a shining light for the Lord while we are here.

Thank you all so much for checking in and praying!!!!!

MAYO Clinic- Day 2

Whew!!!!!  What an amazing day!  Praise the Lord!  

Clinically speaking, we did not have much to report yesterday.  Today was our first day to truly get a taste of what Mayo has to offer.  WOW!  Part of the focus here is to have a team approach and we saw that in action.  Our neuro scheduled quite a few tests that led to other appts, then those appts. led to the scheduling of more tests, etc...each doctor has spent no less than two hours with us.

Thanks to you amazing prayer warriors we were able to not only knock out today's schedule of tests, but we in fact were able to knock out many of the appointments and tests that were originally scheduled for the next couple of days. THANK YOU and PRAISE THE LORD!!!

We still have a lot more tests that need to take place and doc appts that need to be moved up...however, we saw the Lord's hand working today in making so much happen.  So, we're ready to watch the miracle unfold tomorrow, as well.

We started the morning with blood work and then progressed to many of the cardio-focused tests that were ordered (i.e., confirming my POTS diagnosis, doing an ECG, & getting a Holter Monitor).

After our day was done, we realized that we were running low on our water (the water in our hotel comes out a foggy color-yuck) and so we needed to head to the store to get more.  So, taking advantage of the incredible weather, B pushed me in our borrowed wheel chair across Rochester to the local HyVee Supermarket.  For all you Texans, and those that know what triple digit temps are like in June, July, and August, let's just say that 85 and no humidity is, well...VERY NICE!!!!  I have actually had goose bumps for most of the trip.  B has been perfect & comfortable.  He is loving it!  Hopefully, we can bring some of the cooler temps back home to the Big D.

Since I have to take every meal with me, we have had coolers attached to the wheelchair the entire time.  On our way back from the store, we heard a man say, "Gig 'Em Aggies!"  We had our A&M cooler hanging on the wheelchair and he saw it as we passed him.  Turns out he was a student at A&M & his daughter was there while B & I were, as well.  He also grew up in New Braunfels and was a life guard at T Bar M (this is the camp that B grew up attending and worked at through college).  Such a small world.

I had one appt. this afternoon with a physician that happens to be from Texas.  So, we had fun with that connection.  While we were meeting with him, he actually showed me the results from my autonomic tests & other labs from this morning.


The basic findings are:

• I do have POTS (we should learn more about this from the specialist tomorrow when we meet with him).
• He believes my thyroid levels are good, but it is still clear that it is autoimmune.  We have an endo consult and hope they can elaborate.
• He doesn't see the seizures as being an issue for...
  
• Oh, during one of the scans that he ran today, this is what he found:

 YEP, it's a baby!!

 A 10-wk old baby!!!

This is one of the many reasons that we were thrilled to be coming to Mayo.  We found out in May that we have a little one on the way!  Since we lost our first baby (in 2005) at around 8wks, we have been cautiously optimistic.  We have been seeing many different high risk OBs over the last few weeks to see what risks come with seizures, the Ketogenic Diet, and pregnancy!!

The high risk OB was the doc that we saw today and he said that he's not that concerned...the fact that I'm not able to be physically active without triggering seizures is his biggest concern because I could get blood clots.  However, he seemed very excited for us and confident!!!  So, we felt it was time to share the news and get our precious prayer warriors on their knees for this beautiful new life growing inside of us!!!

We have a meeting with his dietitian on Thursday and one with the Keto dietitian on Friday.  We are hoping they can get together and come up with a good plan!  The other great news is that my seizures have decreased since becoming pregnant!  So, we are praising the Lord, not only for the miracle of life, but the miracle of reduced seizures!!

We'll post more later, but wanted to share the fun & exciting news with our prayer warriors!!!

1st day of appts at Mayo

Well, it started today...

I had my first appt. at the Mayo Clinic.  Before we left for the clinic, I called to see if they had received all of my files from Houston...NO!!

So, I put in a call to our precious friend in Houston that was sending them.  She faxed all of the paperwork to Mayo, but thought it would be safer to ship the images (DVD) to us and let us travel with them.  However, they haven't even arrived at our house yet (and she didn't tell us she was doing this).  They are not allowed to overnight anything from Memorial-Hermann in Houston and so even if they are able to make a second copy tonight, they can't actually send it overnight mail.  Someone would have to go pick it up and overnight it for us.  So, Mom is making trips to the house each day in hopes of the disk arriving so that she can overnight them to our doc.  Please pray that it arrives tomorrow, Tuesday.  There are so many scans, tests, etc., that the docs wouldn't want to repeat here (i.e., brain surgery)!!!

They give you an envelope, when you arrive, for all of your medical records.  We had 85+ pages from Houston and I brought another very large stack.  My doc appt. was at 2:30p.  However, this wasn't like most doc appts where they pick up your chart as they walk in the room and say, "so, what brings you in today?"  The doc actually took all of my records at around 2:15p and didn't come in to the room until after 3:15p.  He spent all of that time reviewing my records and creating his own chronology.

He did a basic neuro exam, asked a lot of questions, and told me the different areas he would refer me to while here...we didn't leave the room until 5pm!!!!  Yes, a doc spent that much time with a patient!

Another cool note about this doctor is that he and his wife are adoptive parents.  They have three birth kiddos.  However, they also have two beauties from China!!  We got to share our story about adoption from Korea and how we can't wait until they allow us to adopt (B's cancer & my epilepsy disqualify us now).  We also got to tell him about some friends that are in China right now picking up their little boy!!!  So, that was a special connection.

We start everything he is recommending bright and early tomorrow morning.  They want to do quite a few cardiovascular studies since one of the original diagnoses was POTS (Postural Orthostatic Tachycardia Syndrome).  They are also going to do quite a bit of blood work.  We have been asking about autoimmune components forever and he is going to run the appropriate tests for that, as well.

They are so organized here and print off a nice schedule for you.  However, the schedule has us here until JULY 15th!!!  So, our prayer is that we are able to shorten that...I only have food through Saturday morning.  We are basically able to show up for appts. that are scheduled days in advance and ask them to squeeze us in...Thus, this will be our goal tomorrow.  My first appt. is supposed to be an X-ray at 8:30a, then a tilt table test (back to the POTS) at 9a, and then labs at 10:20a.  However, we are going to try to get the labs taken care of at 7:30a and that will open up the 10a slot for more of the cardio tests that are scheduled for later in the day or later in the week.  The key is getting them all done in enough time that they can be read, discussed, etc., with enough time to still have a follow up with the docs before our flight leaves on Friday!

So, again prayers are greatly appreciated!!!!

By the way, Wed-Sat., I had 30 seizures.  Sun-today, I've had two.  They were both yesterday.  Not a single one today.  It's so crazy...kind of like your car making crazy noises until you arrive at the mechanic.  So, though I want these seizures miraculously gone and cured, you kind of hope you'll have one for the Neurologist to see.  I believe that I have my EEG on Wednesday.  So, if he's going to see one, that would be the time to have it.

Once we finished all of our appts., we made it back to the room and had dinner.  Then, we decided to go on a date!!!  Mayo has a beautiful campus.  So, B grabbed the wheelchair (physical activity is a big seizure trigger for me) and we went on a nice walk through the campus.

Here we are in front of the main clinic.

This is us with Drs. Mayo.

The original Mayo Medical School.

Finally, a picture of the best looking chauffeur, wheelchair pusher, caregiver, hubby, in the world!!!

Tomorrow should be a very busy day.  So, no idea when the posts will arrive.  However, we covet your prayers for:

• each and every step of the schedule
• each doctor, tech, etc., and their wisdom
• B's strength since he's having to do all of the walking and pushing
• that the right symptoms will occur at the right times for the right diagnosis
• that each office will be prepared for us
• that we will be a light and shine for the Lord and HE will receive ALL the glory!!

We love you all and are so grateful for all of the precious encouragement we've received from B's facebook page to all of the texts I have received...thank you!  It's awesome to know that we've got prayer warriors out there calling on HIS name for our sake.

God's Hand!!!

Well, day 1 is complete and I'll post an update on that soon.  However, just want you to know how we truly saw the Lord's hand in everything yesterday:

1.  We were late getting to my uncle's house (he was taking us to the airport & letting us park at his house).  He called and offered to just meet us at the airport and drive B's truck back to his house!  WOW!  That saved us considerable time so that we didn't miss our flight.

2.  When we got to our gate, the flight was delayed.  So, that gave us a few more minutes to collect ourselves.  Then, the flight attendant started getting upset about my cooler that he couldn't store it on the flight (this is something they are always precious about doing...).  Anyway, he said that if he stored that, we could take any of our carry-ons with us and they had to be checked all the way to Rochester.  Those contained items we couldn't part with either (i.e., meds, gram scale, computer with all of my meal plans, etc.) if it didn't get transferred or if the flight was delayed!

Another gentleman, on our flight, overheard this and allowed his carry-on to be checked so that we didn't have to worry about checking ours!!!!  What a blessing!

3. Since our flight from the Big D was so delayed, we only had about 15 minutes before the flight to Rochester left (this was the last flight out for the night).  So, we would be stuck in Chicago with all of our stuff waiting in Rochester.  So, B rushed to the gate to hold the plane and the sweet lady at the airport booked it with the wheelchair.  When we arrived, we found that the pilot was late and so the flight was delayed!!

4.  We arrived at our hotel (we had to go with the only hotel that we could find with a full kitchen since we have to prepare all of my meals) and it was scary...when I called the front desk to tell the lady what we found in the room, she agreed it was gross...we started calling around and found another hotel (more expensive, but they had a full kitchen).  The hotel we were at gave us a ride to the new hotel!  How sweet is that?  When we arrived at the new hotel, we found that it is attached to the Mayo Clinic.  So, B is able to just push me in the wheelchair over to the clinic!!!

So, just had to share a few ways that we saw the Lord at work yesterday!!

We'll post an update soon on today, but we've got to eat some dinner!

Thank you all for your prayers!!!

June 27th Nate Update

"We had some minor bumps this week, but all was corrected quickly and Nate actually started round two of chemo. He got out of the hospital this morning and has 4 days left in this cycle. July should be a very busy month. He will first drop, then once his counts recover the plan is to move forward with his stem cell harvest. I will spare you all the details, but Nate will be involved in the harvest, another bone marrow biopsy and bone scans in the coming weeks. Using all of the information gathered we will be making final decisions as to what route to go with the transplant. Jake will also be harvested in the coming weeks. We are in long meetings with Nate's doctors and will continue to be in deep discussions with them as the transplant in now in sight. We are praying for wisdom and guidance from God. You all have been with us on this long journey and held us up with prayer. We are thankful and ask that you continue to pray for our little guy and so many others who are suffering. Thank you!"

MAYO CLINIC DAY 1....The Journey Begins

Well, we finally made it. Four + long years and we have been able to take M's case to Rochester, MN. First, please pray with us that God will be glorified in all that we do while here. That all who we meet and come in contact with, that God would get credit from everything from our actions to words. Second, please pray that we will begin to find answers as early as tomorrow!!!!

So our journey is continuing, but with a new chapter...Already we have seen God's hands involved through our flight. We were late leaving the Big D and that meant we would be cutting it very close to even have a remote chance of catching our flight in Chicago that connect us to Rochester. Furthermore, our flight from Chicago was the last one to Rochester and as most of you know, we have to bring every little bit of M's food with us so having an overnight in Chicago isn't just something we can really do....

Anyway, all that to say we did get to Chicago and Praise the Lord, our connecting flight was delayed by about an hour (origninally we had about 15 mins to deplane and get across O'Hare to our other flight before it took off).

And, lastly we did get checked into our hotel and are looking forward to tomorrow's start at the Mayo Clinic. We will be sure to continue to post. FYI-our first appointment is tomorrow at 2 p.

MAYO

Bring out the best.

This is what we are hoping for...

Yes, I have had to add a lot of mayo to my daily menu to keep up with the nutritional therapy they have placed me on for my seizures. However, we leave this weekend for the Mayo Clinic in Minnesota!! Praise the Lord!

They are ranked at the top as far as neurology goes and so we are praying that they are able to help us uncover more and actually get to the bottom of all of this. We are also seeing an autonomic specialist, for the POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis. We saw a neurosurgeon a few weeks ago that said epilepsy can mimic POTS. So, we hope that they can put all of the pieces together. We are also trying to get in with an endocrinologist to see how my thyroid/auto-immune condition could play into everything.

We have a praise!! I went seven days last week without any seizures! That is the longest I've ever gone!!

However, in the last three days, I have had 25 seizures!!!!! We don't know what has changed. I basically have the same meals every single day, take the same meds, do the same things....so, we are hoping that they are able to help us uncover more...

We'll try to get better about updates while we are there...

We covet your prayers!!!!

From Connor's Mommy

Wednesday, June 23, 2010

I've been having a hard time sitting down at the computer to write this next entry. I've been trying for a week now. I'm trying so hard to write something uplifting and inspirational, but I just come up empty. My mind is so saturated with memories of Connor's last few weeks. A year ago tomorrow, we flew home from Guatemala for the last time. Painful memories. From May until July 10, every day leads me back to where we were a year ago. I guess it's just going to be this way for awhile. Instead of lingering on my difficult times, I thought I would leave you with a new song by Matthew West. It's called "Save a Place for Me." It says exactly what I feel.

Don't be mad if I cry
It just hurts so bad sometimes
'Cause everyday it's sinking in
And I have to say goodbye all over again You know I bet it feels good to have the weight of this world off your shoulders now I'm dreaming of the day when I'm finally there with you

Save a place for me
Save a place for me
I'll be there soon
I'll be there soon
Save a place for me
Save some grace for me
I'll be there soon
I'll be there soon

I have asked the question why
But I guess the answer's for another time So instead I'll pray with every tear And be thankful for the time I had you here And I wanna live my life just like you did Make the most of my time just like you did And I wanna make my home up in the sky Just like you did Oh, but until I get there Until I get there

Save a place for me!

On a different note, thanks to all our TeamConnor friends and supporters who made our CT Relay Run and our III Forks Golf tournament and Dinner a success. You guys are the BEST!

Always believing,
Joy

From Nate's Mommy

"We went to the doctor this morning and platelets are still down. So the wait continues and we are praying in a few more days Nate will be ready for his next round of chemo. We will be meeting very soon with the stem cell transplant team to discuss the next step for Nate. PLEASE pray for us to have wisdom as we move forward."

Two Nate Updates

June 10 at 7:59am

Wes provided an update last night on Nate. Nate had a biopsy yesterday and the early response from Dr's is that the left side of Nate's hip does not have cancer, the right side shows signs of cancer but the tumors are reducing in size. The full results will be released on Monday. This means that the cancer tumors are responding to the Chemo treatments that are taking place. Also, it was revealed yesterday that Jake (Nate's older brother) is a perfect match for Stem Cells which will mean there is a good supply of these cells for Nate’s treatement. This is not the same as a bone marrow transplant. For Stem Cell therapy, the cells have to come from either Nate himself or a matching donor. The Stem Cell treatment is still about a month away as Nate continues with Chemo. Once the tumors have reduced in size, they will begin this treatment.

June 11 at 9:40pm

Wes just called with good news about the pathology report. They just received the report back and the Dr's are saying that the Chemo treatment Nate has been receiving has been very effective and shows no Cancer. The last test that Nate had showed cancer in his legs and hips. That has now cleared up. Nate will continue this current Chemo treatment for another month and will then start the Stem Cell treatment. Let's all continue to pray for Nate, Wes, Jackie, Jake and Luke as they continue to walk through this valley asking God to give His sustaining help. "Surely God is my help; the Lord is the one who sustains me." Psalm 54:4

Nate Update

I wanted to update everyone on the latest update on Nate. Jackie said that Nate's counts have recovered. He will have his bone marrow biopsy tomorrow and should have results on Monday. Nate had a platelets transfusion last week. As long as his platelets’ look good he will be admitted to the hospital for chemo on Thursday or Friday. Please continue your prayers for Nate and the Oxfords and the biopsy tomorrow.
In Christ,
Scott

Snow Day

I'm so behind on posting on the blog. So, I started going back through our old pics to see what I had missed...

I was going through our pics from the snow days and almost skipped over them. However, I realized with it being as hot as it is today, snow day pics might be helpful!!!

So, sit back and cool off...

Maybe have a picnic with your family!!

Go run around & play!!
Stop & smile for the camera!

Everyone stay cool!!

From Nate's Mommy

"Yesterday, Nate's counts had dropped and he needed platelets again. His bone scans showed what we already knew, that Nate has a lot of tumor basically all over his little body. The doctor is thinking Nate's counts will recover within a week or so and we will continue chemo. He will have a bone marrow sample taken once his counts recover. This will give the doctors more information for current and future plans. He is feeling fine, playing Wii and making crafts. Please continue to pray for a response. Love you all!!!"

Fundraiser for Little Nate's family tonight

For those of you that live anywhere near Rockwall, there will be a fundraiser tonight for Nate's family. They are out in LA having some new treatments...

The Rockwall Chiloso will give 20% of your purchase to the Oxford's.

Fundraiser Details:

Chiloso

2455 Ridge Road, Rockwall

5-9pm

They will have a bucket sitting out for you to put your receipt in....you have to put your receipt in this bucket for the donation to count...so, make sure you put your receipt in the bucket and support Nate and his family!!!