Chris at home

Chris got released at about noon today from the hospital. The car ride wasn't too much fun for him and he ended up puking a bit when we got home. He's sleeping now.

Overall he's exhausted and nauseous but I'm glad he's sleeping in his own bed at home. His Dr says his blood counts look good.

They sent him home with 5 scripts and thankfully the CCK (Cancer Center of Kansas) is helping me get cheaper versions of some and assistance for some others. 

He'll need to get a shot to boost his white blood cells everyday until he's back in the hospital for his next treatment in about 2 weeks. He's scheduled for blood draws every Monday to check his levels. He'll be getting another spinal tap on Monday also. He'll be going back to the hospital for his 2nd chemo treatment around the 16th of August. 

The spinal taps are to check to make sure the cancer hasn't spread and to also give him preventative chemo in his spine. He's had one so far and will have 2-3 a month for the next 5-6 months. 

Chris' mom left for Texas this morning and took Magnus with her for a few weeks so Chris and I can figure out how he'll feel after these chemo treatments. I am so thankful to have someone we love and trust to take care of our little boy while we go through this process. It was very hard to see him go and I'll miss him more than words can express.

update

I will try and post another update when I get home from work tonight - right now I'm off to visit Chris before I head to work. 
I saw him three times yesterday and Mary, Magnus and I visited him briefly this morning before his spinal tap. 
He is feeling pretty nauseous from the chemo drugs but the steroids also make him hungry. 
One of his nurses gave me a schedule of all the drugs he's taking or will be taking while he's there so I can post that later.
He started out sharing his room but his roommate was moved out so hopefully he stays roommate free until he comes home!
Thank you again everyone for all your thoughts and prayers!

in the hospital

Chris is all moved into his room here at St. Francis hospital. He will start his chemo treatments around 2 p.m. and be on 12 hours cycles of it for 6 doses.
His nurse is nick-named "the Arch" and she has a great sense of humor and gives us all t. She'll be his daytime nurse for most of the time he is here.
He'll have a spinal tap tomorrow and again next Monday. He can be released as early as Friday as long as his counts are ok and he feels well enough.
He will be back every 21 days from today's date for his chemo treatments.
He has his cell phone with him so feel free to call or text him and he will answer as he can.
I'm going to stay here with him until after he starts his first dose of chemo and then give Mary a chance to see him too.
I'll type more later after I figure out how to stop the very sensitive touch-pad on Chris' laptop from jumping to other parts of the screen when I'm typing.

Thank you all for your support!

website links

I'm doing some googling of sites with more information on lymphoblastic lymphoma (LBL) and thought I'd post them here as I find them.

http://www.cancernetwork.com/leukemia-lymphoma/content/article/10165/1485422

treatment plan and more details

The news -

The cancer is only in Chris' chest/throat area. It is not in his spinal fluid or bone marrow which is very good news. He has lymphoblastic lymphoma not acute lymphoblastic leukemia. The distinction between the two is arbitrary - they have basically the same treatment plan. One is cancer of the lymph nodes (what he has) and the other is cancer of the blood & bone marrow (leukemia). 

His cancer is classified at about a stage II since it is only in his chest. This is also good because what I read is that usually lymphoblastic lymphoma isn't caught until it's stage IV. 

Chris will be on a 3 week cycle of chemo for the next 5-6 months and after that he will need maintenance chemo for 2-3 years.

He'll start next week with a 5 day stay in the hospital and then need to go back every 3 weeks for 2-3 days in hospital for the chemo treatments during the initial 5-6 month period.

While he still has a tough road ahead of him it is very good news that it is only in his chest. 

When I go with him to the hospital on Monday morning they will give me more details about his treatment schedule like when he'll take what drugs. I have the drugs "hyper-CVAD" and "MTX" and "Ara-C" written in my notes from what he told me. 

He will have to get spinal taps done twice every 3 weeks to make sure the cancer isn't spreading. 

update

Got home a little while ago from getting his picc line flushed and re-dressed. No test results in yet so we'll have to be patient until his appointment Friday afternoon.

surgery today

He checked in at pre-op about 35 minutes ago and were told his surgery isn't scheduled until 11 a.m. The waiting room was packed and asked the volunteer if it was possible for him to lay down until he has surgery. After his blood patch (also done here) yesterday morning he was told to lay flat and rest as much as possible in the next 24 hours.
They found a bed for him to lay in until surgery in the recovery room but I can't be in there. So I'm hanging out in the cafeteria down the hall with my little pager that will go off when he is out of surgery which could be as late as 1 or 2 p.m. depending upon how the schedule goes.
Thankfully there is wireless access and I have my files about all this new cancer stuff to organize and papers to fill out and phone calls to make to pass the time.
His surgery today is to put in a triple-lumen catheter for when he starts chemo and hopefully we'll find out Friday when that will be.

{{update}}

The picc line procedure went fine and Chis is taking all this pretty well. He's home resting now and we are scheduled to go to Dr. Cannon's office tomorrow to get the line re-dressed and flushed out. While we are there I'm going to see if they have gotten any of his results back from his tests instead of waiting until Friday.

Dr. Niederee, his surgeon, decided against the triple lumen catheter because of how large the mass is around his throat and chest. He didn't want to risk any additional swelling in that area. 

Chris status update - blood patch tomorrow a.m.

Because of his headaches from his spinal tap aka lumbar puncture (LP) on Friday he will need to go in tomorrow for a blood patch. Here is a summary of what that procedure is:

"Blood patch: If your headache is caused by a leakage of CSF from the LP site, a blood patch procedure may be needed. This procedure uses a small amount of your blood, that is taken from a vein, to patch (seal) the LP leak. The blood is put through a needle into your spinal canal in the same way that the LP was done. You will need to lie in bed for 1 to 2 hours after this procedure. This procedure may need to be repeated if your headache is not relieved."

So he'll have this done tomorrow morning which will hopefully relieve his headaches. Then we'll probably head straight to the clinic near our house to have his full body CT scan and heart MUGA scan done.

He is also scheduled to see his oncologist Friday afternoon where we are hoping to have all the results from these tests. Then we are hoping to get his complete diagnosis and treatment plan. 

Chris status

We're back in the hospital room after his spinal tap. He has to lay flat for about 4 hours so the insertion area can close so he doesn't leak spinal fluid. We should be able to leave at 1:30 as long as his vitals are fine and he doesn't develop side effects (headaches other than the headaches he already has). 
To give people an idea of his routine now he mostly stays in bed all day. He has absolutely no energy and the most activity he's capable of is leaving the house for procedures. The approximately 10 cm mass on his throat will not go away until he has chemo so swallowing is very difficult and painful. The mass is pressing into his larynx so his voice goes in and out. 
The tests he has Monday afternoon (CT and MUGA scans) are painless but tedious.

tests/procedures scheduled

Friday (today): Lumbar puncture (spinal tap) 

Monday: Full body CT scan and a MUGA scan of his heart

Tuesday: insertion of a triple lumen catheter for when he starts chemo

As soon as the results from these tests are in we will meet with his oncologist to discuss them and start chemo. 

reading material on ALL

The oncologist printed out some information for us about ALL in adults. I found the resource online and will link it below.
I'm the type of person that likes to have a complete picture, good and bad, and all the facts. Not everything in the article will apply to him, it's just a guide. 
I know everyone is worried but right now we have way more questions than answers. I'm putting updates on here as we have them; we probably won't know anything new until next week after all his tests are completed and we see the oncologist again to discuss the results. 
As soon as we know more I'll post an update on here.

Here's the link to the information on ALL(acute lymphoblastic leukemia).

http://www.uptodate.com/patients/content/topic.do?topicKey=%7EIN5ByvkllxxbtI

oncologist appointment

Ok so met with the oncologist today and got some more info. Chris either has lymphoblastic lymphoma or acute lymphoblastic leukemia (ALL). The difference between the two is arbitrary, they are essentially treated the same way. 
It is an aggressive cancer so he's getting a number of tests done over the next few day so they can find out what stage it is. After that's determined they'll start chemo treatments, maybe by the end of the next week. 
He had a bone marrow test and blood-work today. The bone marrow test looked awful and Chris did not enjoy it to say the least. He has something like 4 more tests(including a spinal tap and lung puncture)over the next few days and early next week. 
So I won't have much more info until we found out what stage the cancer is in and that should be in the early part of next week. 
It's all feeling a bit surreal and it's sinking in how quickly our day-to-day lives are and will be changing. 
I'll be taking a break from school and time off of work as needed to be with Chris for his appointments and treatment. 
His wonderful mother has said she'll help us out as much as needed; I don't know what we'd be doing without her!

update part II

Ok so we went to see the Dr. who is a surgeon and only had general info for us. Chris has lymphoblastic lymphoma and will be starting chemotherapy/radiation soon. We have an appointment tomorrow afternoon to see the oncologist who will have more info for us.

I just wanted to say thank you to all of our friends and family. The thoughts/words/prayers are very much appreciated and we will ask for help if we need it.

It's a very treatable type of cancer and we are optimistic about the outcome. I'll keep updating on here as we know things. It's an easy way to get the word out since I don't have much time to spend on the phone and it is painful for Chris to talk and he sounds like Christian Bale in Dark Knight when he does talk. 

update on Chris

I figured it would probably be easier to just type a note on here explaining what's going on with Chris' health instead of elusive status messages.
A few weeks ago Chris discovered a large painful lump on his throat. He went to the Dr. they first tested him for hypothyroidism and that came back negative, he then had a sonogram and told him he would need a biopsy. The lump is a large nodule on his thyroid - about 9cm in size now. He's had two biopsies to test for thyroid cancer. The first was about 10 days ago and the results came back inconclusive, the last one was this past Wednesday and we're hoping to get the results on Monday. 
The nodule is very painful and makes swallowing difficult and whatever is going on explains his complete lack of energy for the last 6 months or so. It's also made his already sketchy memory even worse and for reasons the doctors don't know made his headaches more frequent and painful. His wonderful mom is in town to help us out while we figure out what is going on with his health. 
It's been a bit stressful since Chris takes care of so much usually. Trying to juggle what he usually does and work and school has been a bit hectic.
I let myself freak out about for an afternoon worrying about the what if's of his test results and then moved on realizing torturing myself isn't going to help. Whatever he does or doesn't have won't change by me freaking out so we'll just wait for the results and go from there.