Hello from Texas!

Hi everyone,

So sorry to hear of the weather back home! It is 84 here, but I have been too busy to even get outside to enjoy it. Tomorrow it is supposed to be cold (Texans words) at around 50 - 60. I'll just have to grin and bare it, huh? Well, back to work now.

ttyl,
Vicki

Chemo

Hello Everyone,
I'm very sorry I haven't gotten something up here a bit earlier. I am extremely busy at work and I'm preparing to be gone from Wed to Sunday in Texas for work.

Steve has made it through his first chemo treatment. It's a lengthy process. Before each treatment he has to go up and have blood drawn and then about an 1 to 1.5 hours later he meets with the Dr. He will then find out if they can go ahead with the treatment. They will be watching his cell count very close and if things aren't right they will put off treatment for a couple days to a week. The drugs take some time to administer. There are 4 drugs altogther and 3 of them take a matter of minutes to push into the port. The final one is a large bag and takes two hours to drip.

Anyway, he was doing okay and does have some medication for anti-nauseau so hopefully that won't be too much of a factor. We shall see.
We will definitely keep you posted here.

Thanks,
~Vicki

Dermatology visit

We finally had the visit with the dermatologist yesterday. Dr Davis said he feels it is nothing to worry about, in fact he didn't think it was even a mole. Something about blood vessels...
Anyway, he shaved it off and will biopsy it. We should hear in a week or so.

All for now...
Vicki

Spending quality time with Spiderman!

This is while waiting to go into surgery. It shows his shaved head pretty well, although there's already a couple days growth. I love this picture. Might not be great quality though, I took this with my phone. (I actually forgot my camera!)

And yes, that is Spiderman behind him. lol. The other wall had all of the Disney princesses on it.

Happy Weekend!

~Vicki

The Port is in..

Hi all,
Steve got the port put in place today and all is ready to begin chemo on Monday. We saw the radiation oncologist, Dr Smith, this morning. Just a consult before chemo gets going. We really liked him and will be visiting with him again once chemo is complete.

It was a long wait to get into surgery but it went good. He was just sedated rather than general anesthesia. He was very groggy when he came back and Kelly and I had a few good laughs listening to him chat. Most of you know he is a pretty easy kid to talk with and has a great sense of humor, but with new people he usually needs to get to know them before the good humor shows. Well, when he came back from surgery he was quite chatty. Some examples...

Every time someone came in and asked him how he was doing he would say "I'm doing great, how are you doing?"

He looked down at the bed he was on and said, "oh, I see I'm on a new bed thingy, now I feel bad... that means they had to move me and I'm not what you would call a small guy!"

The nurse was talking with him about a follow-up appt with the surgeon and she walked out to make that appt. She said she would be right back, Steve said... "okay, I'll just stay right here."

He had to take his contacts out and was mumbling about not being able to see anything. A nurse walked by and I mentioned that she looked familiar. He looked out and said..." yeah she does... she looks like every other blurr that walks by."

There were more but these were pretty funny to us. Just thought I would share.

Take care... Vicki

I shaved my head

Steve here.  So I was in need of a haircut, and when I was home all day Sunday I decided I'd just shave it all off.  So it's gone now! I'm bald and it's weird, haha.  Anywho, now for the more important matters at hand.  My hair is gone and my head is weirder shaped than I ever thought it would be. Oh well, you can't win 'em all!  

Now in complete seriousness, I would like to extend a very very strong and heartfelt thank you to everyone who's been keeping me and my health in their thoughts and prayers.  Like I mentioned in a previous post, all of this support really is helping me to keep positive.  Without all of you, I just know I'd find myself in a very depressing mood 95% of the time.  Specifically, I would like to say thank you so much to the Messiah Knitting Ministry and the ladies of the Bible study group, you know who you are.  Thank you very much for the generous and thoughtful prayer shawl gift!  It's very beautiful and I'm positive my family and I will hold it very close throughout this experience.  I know it means a lot to me and I can guarantee it means a ton to my mom.  

For a little update, I had a consult with Dr. Morris this morning.  He's the surgeon who's going to be throwing a port in my chest.  I thought he seemed like a very nice guy and my mom and I could just tell that he is the kind of doctor who's very comfortable in a surgery-type situation.  I think I'm in good hands with him.  Now we're just waiting on Wednesday to come for my consult with the radiation oncologist, and right after that, my port placement surgery!

Hoping all is well with everyone,

--Steve

GREAT NEWS!!

I just recieved a phone call from Dr. C ~ ~
Radiation can be done in Mankato! Wah Hoo!!! We are quite relieved.

Still to come: an appointment with the radiation dr and the port needs to be put in. Then a visit to the dermatologist is scheduled for the 20th, though we hope to get in earlier.

It looks like, at this point, the first chemo treatment will be Monday, Feb 23rd.

I believe the prayers are working! Keep it up y'all and we will continue loving every one of you.

Til next time...
~Vicki

Bone Marrow Biopsy Results

Steve here. I'm going to add on to my mom's "Results" post.  We heard the results of the biopsy.  The cancer is not in my bone marrow which is a very, very good thing.  Now to discuss treatment.  My options at this point are: I can do chemotherapy for 4 months, and then radiation therapy after the chemo for 4-6 weeks, or I can do 6 months of chemotherapy with no radiation therapy at all.  The catch is, for the radiation, it would be 5 days a week, for 4-6 weeks, and the bad part is that I'd have to go to rochester for that treatment.  So I would have to drive to rochester every week day for 4-6 weeks to get radiation therapy.  The downside of skipping radiation and just doing 6 months of chemo is that some of the drugs used in chemotherapy can be pretty hard on the heart and lungs, so that would be 2 extra months of exposing my heart and lungs to those drugs.  Dr. Cockeril told me in my first meeting with him that it is really quite important to try to continue on with my normal life and try to maintain my normal lifestyle even while going through treatment.  I strongly agree with this and vowed to myself that I would try the best I can to keep leading a normal life including school, work, hopefully baseball this summer, and somewhat of a social life.  My problem with the 4 month chemo plus radiation, is that for me to commit to this treatment plan, I would basically have to throw out all my hopes that I had for this summer of working a lot and saving a bunch of money, and playing baseball, all while finding time to spend with my friends.  So, as far as I'm concerned, driving to Rochester every single day for 4 to 6 weeks is completely out of the question. So as it stands, I'd rather take the 6 months of chemo.  I talked to Dr. Cockeril about this and told him I'd feel much more comfortable if we were to do the radiation therapy here in mankato, and he said he'd talk to Dr. Inwards at Mayo to see what he thinks, so hopefully we can do that.  This is going to be an extremely tough overall decision for me so I've got a lot of thinking to do within the next few days, and I'd like to decide as soon as I can and get this show on the road.  The sooner I start treatment, the sooner I'm cancer free and continuing on with my life.  

I've been getting a little frustrated with all the hoops we've been jumping through to reach an ultimate conclusion at this point and I'm getting incredibly anxious and sick of waiting for everything, but I'm trying as hard as I possibly can to keep a positive attitude, but so far this whole process has been a real test of my patience and optimism.  Anyway I'm giving it my all to look at the big picture and tell myself that although it's in no way fun, it's what's best and I need to keep positive.  It's a real pick-me-up every time I come on this blog and see all the overwhelming support from everyone and it really helps me to remind myself that it'll all turn out for the better. So thank you sooooo much everyone who's been keeping me in their thoughts and prayers, I can feel it all and it helps give me the strength to push through this!

Much love to all,

Steve

Results

The bone marrow biopsy results are negative. That is good. Now we are waiting for a couple of other things. Dr C is trying to get him in to see the dermatologist sooner than what we were able to get an appointment. He has one very suspicious looking mole on his shoulder that needs looking at. Then we need to see about getting a port put in place. He is also trying to find out if a visit to a Radiation dr is needed in order to help us make a treatment decision.

We will fill you in more when we get more info and make a decision.

Chao! Vicki

Still waiting...

Hello everyone~
I'm sure you are wondering if we've heard anything regarding the results of the bone marrow biopsy. We have not. We are anxiously waiting to get that news. The doctor told us it would take a minimum of 2 days. Please continue to pray with us, we appreciate it. I will get word on here as soon as we know.
Have a great day!
~Vicki

Visit to Mayo Clinic in Rochester

Today we went to Mayo Clinic to see Dr David Inward for a second opinion at Dr Cockerill's request. Dr Cockerill wanted his take on things since we can't definitely say Steve is experiencing "B" Symptoms or not and for the fact that the CT Scan showed his spleen to be mildly enlarged. It's not so enlarged to make them want to say yes it is affected and the PET scan didn't pick up anything in that area. Dr Inward said because of these uncertainties it is necessary to do the bone marrow biopsy. He wanted him to have that done and to see a radiation oncologist (rad onc) for their opinion on whether radiation could be an option. And that depends on the results of the biopsy. If there is cancer in the bone marrow then radiation is not an option at all. So... they were going to do these two things plus see Dr Inward again tomorrow. :( Steve was not happy about having to either stay overnight or drive back tomorrow plus miss another day of classes and not to mention ANOTHER DAY OF FASTING! The poor guy... it seems like every other day there was a test he had to fast for. So after some talking, they said there was an opening to do a biopsy today if he chose to do it unsedated. With a local anesthetic. Then we cancelled the other appointments so we won't go back tomorrow. The biopsy is done. Let me say, Steve did not enjoy this at all. I'm sure he will have more to say on that.
We got the impression that this doctor was understanding that Dr Cockerill referred Steve there for care... rather than a second opinion. This is not what we wanted at all and we didn't feel that is was Dr Cockerill's intention. This is why we cancelled the appts at rad onc and Dr Inward for tomorrow. We spoke with Dr Cockerill on the way home and let him know all of this and that our wishes are to stay put with him here in Mankato and have him communicate with Dr Inward for his expertise and knowledge. He agreed and so at this point we will wait for the results of the biopsy and then do what we need to do here. We hope for the results on Monday but it could likely be Tuesday. Dr Inward did say he would guess that the biopsy will be negative. We certainly hope he is right. We will let you all know.
Have a great weekend! - - Vicki

Steve here--

Just to add on to what my mom said, I definitely did not enjoy my unsedated bone marrow biopsy, as it was one of the most painful experience I've ever had.  It hurt more than words can explain, and continued to hurt even after the biopsy and after a night of sleep, it still does (yay) and actually made it a pretty uncomfortable night as far as sleeping is concerned.

All I can say is if anyone has to get a bone marrow biopsy, get sedated. 

--Steve

PET Scan and meeting with Dr. Cockeril

Steve here. After the meeting with my oncologist last Thursday, we found out I needed to undergo 4 more diagnostic tests before we could determine what stage of the Hodgkins Lymphoma that I'm in. The first was the Pulminary Function Test (PFT) which I had to take later that very day, which was a test of my lungs, since some parts of chemo can be fairly hard on the lungs, and they needed to see if my lungs could handle it. They also took blood this same day to do a complete workup and that all turned out great. The second was a Multigated Acquisition Scan (MUGA Scan) that I took last Friday at 2 pm. This one was a scan of my heart and the major arteries. Then right after the MUGA Scan on Friday, I took another CT Scan, this time of my torso and pelvis, to see if I had anymore tumors below my diaphram. The last test took place today at 2 pm. It was a whole boy Positron Emission Tomography Scan (PET Scan) and this one was a scan of my whole body from my shoulders down to my knees to see if the lymphoma cells have spread to any other parts of my body.

Right after the PET Scan, I met with Dr. Cockeril again to discuss the results from all the testing I did in the last 5 days. We didn't find out everything we necessarily wanted to know today but what we did hear was nothing but good news! The results show that none of the infected cells have spread to below my diaphram, so its all within my chest and shoulder area, and within that area, he said that it looks like it really is quite minimal. Now, we were hoping to be able to diagnose what stage of the lymphoma I'm in, so we could decide on a treatment plan from here, but unfortunately, the people who analyzed my CT scan said it seems like my spleen is a little enlarged. Because of this, we can't quite diagnose the stage I'm in just yet, because Dr. Cockeril says we cannot be sure. So, he is sending me down to Rochester to get a second opinion on all of the tests and scans, and that will be on Thursday. There is a possibility that I may need to get a bone marrow biopsy in order to determine whether I'm experiencing 'A' symptoms or 'B' symptoms, because at the current moment, that information is very unclear. Like I said, I didn't find out exactly what I hoped to know by the end of today, but the little bit that I did hear, I feel very positive and very much at ease because of how Dr. Cockeril said that it doesn't seem like it's spread very much.

I'll post again after the trip to Mayo on Thursday with all of the information we hear from the doctors there! Thanks a lot everyone for the support!

-Steve