Saturday, November 21, 2009

Today has been a very nice day. No appointments. No needles. No stress.

Dwight took 4 of the kids out for the day. They seemed to have had a good time together. I think they all really enjoyed being out of the house.

Jessica, Ryan and I went shopping for a light jacket for Jessica. I would have never imagined that my daughter would hate to shop. She doesn't like the feeling of the material. or the color. or the look. "Everyone has one of those." "It's too formal." "Can I paint something really awesome on it?" "Can I modify it?" I can tolerate it for about 45 minutes and then I'm ready to go home. Seriously. So, no, we did not find her a jacket. I think it's Dwight's turn to take her shopping next. But, instead of going home, we bought pretzels and lemonades, and just walked and talked. It was nice. I miss Jessica.

Later this evening, Jessica, Deborah, and Ryan went with me to the new house. We measured all the rooms and the windows. We need to clean the place, paint a few rooms, and put up some blinds and curtains. I'm anxious to get moved in. Actually, I'm anxious to mark the move off the list.

Can you believe this next week is Thanksgiving? I need to come up with something nice that our family can do for the nurses who will be working while we're at the hospital. If you have any thoughts, please let me know.

Enjoy your Sabbath tomorrow!

Friday, November 20, 2009

So to finish yesterday's update ...

Yesterday I updated you on my Lymphoma. One more update for today... I had the lymph node biopsy this morning. Not fun, but not as bad as a bone marrow biopsy. They did 5 passes and we should have the results by Tuesday afternoon. Hopefully, we'll have them by Tuesday morning when I meet with the 2nd Oncologist.

It's also been strongly recommended that I have the lump on the back of my neck biopsied. At the first meeting with the Oncologist, he passed it off as nothing to worry about. However, since all the other lumps have been Lymphoma, it's recommended that I have that one biopsied as well. Ugh. I wish they could have biopsied everything at one time instead of having to do so many different appointments.

Ryan's Health. Today we rescheduled Ryan's surgery to Tuesday. The pediatric surgeon will be doing a gastrostomy with a fundoplication. There are two types of fundoplications, Nissen and Thal. The surgeon feels we'd have the best success with the Thal fundoplication. That simply means that instead of wrapping the stomach all the way around the esophagus, it will be wrapped partially -- like a C. He will then have a button g-tube. If you click here, you can read a little more and see a picture of a button gastrostomy. I'll post a picture after Ryan gets his.

They will do an incision on Ryan's belly ... a couple of inches long, and he will of course be under heavy sedation. They will give him long-acting pain relief and keep him on an IV for at least 24 hours. Then they will slowly introduce liquids to see how his stomach does with it. Ryan and I will stay at the hospital until he is consuming at least 75% of the calories he should be getting each day. The surgeon said it will be til at least Friday, but they may keep us longer. In the meantime, we'll just continue to work on coaxing him to eat and we'll wait.

Deborah and Johnathon are both running fevers and vomiting today. So, we're keeping Ryan quarantined from them. With as little as he's already eating, I think we'd just end up in the hospital early and having to delay the surgery.

Okay, and finally, another update ... the house. Remember last week when we had a plumbing issue? Well, right after I paid the $360 to the plumber, I sent an email to the owner letting him know that I would just deduct it from December's amount due. He was just glad I had taken care of it and that we weren't without water.

Then I went to the mailbox and received a letter that said ... are you ready for this? ... the house is being foreclosed on December 1st. Yeah, you read that right, and NO I didn't/ wouldn't/ couldn't make up this story. I called the owner and he denied it. Then reminded me that he wanted me to still take $250 off the rent amount for December. "Consider it an early Christmas present." Is that a present to me, or a present to him???

But, there is good news! A friend of ours, who has a house that is completely paid off, would like us to lease her house. I think it's a great fit for our family, and will even be a blessing. I'm hoping we can get through Christmas before we have to move. I'll keep you posted.

I think that's it for now. I have some cute pics of the kids that I need to pull off my phone and off my camera to share with you all. But another day. There's so much that I really would like to get done around the house, but I think I'm going to snuggle up with my little munchkins and enjoy a movie ... and maybe a nap. :)

Thank you for all the yummy food, the phone calls, the emails, the letters, the babysitting, and especially the prayers! I have the best friends in the world and am truly blessed! Love you all!

Thursday, November 19, 2009

The Promised Update

<I started this post earlier tonight before the employment workshop. I thought I'd feel up to completing it tonight, but I'm really not up to it. I know some of you feel like I've left you hanging. So, here's part of the update. I'll finish it tomorrow.>

I'm sorry for not posting an update sooner. I'm not very happy with the news and needed a little time to process it. So, I have 3 things to tell you about: Lymphoma, Ryan's health, and house stuff.

The Lymphoma. Since the other lumps all came back as Lymphoma (bummer), we now need to be more aggressive in the treatment of the Lymphoma. Additionally, the lymph node that they found in my breast tissue needs to be biopsied. The Oncologist suspects that it will also come back as a Lymphoma, which means that the Cancer has become systemic. We had hoped that it was only in the one lump. We were wrong. We had also hoped that it was only cutaneous, meaning just in the skin. Hopefully, we're not wrong about that.

Assuming the biopsy comes back without Lymphoma, then we will use a whimpy version of chemotherapy. Most people tolerate it well and, for whatever it's worth, most people don't lose their hair. (Am I the only person who really doesn't care if I lose my hair? Why is that such a selling point?) Once we have the biopsy back, then I need to attend "Chemo training". I don't really even know what that means.

If the biopsy comes back with Lymphoma, then we will need to do the traditional, full scale chemotherapy ... you know the one, puke your guts out, feel super crummy, and lose your hair chemotherapy. (Seriously, I don't really mind losing my hair. Think about the great messages I could write on my bald head! I could get my artist daughter to draw a realistic face on the back of my head. Oh, really, we could make the best of a bald head.)

I'd personally like the chemotherapy that makes you super fit, perfectly proportioned, and really energetic. Whatever that is ... hand it over.

So, I have a lymph node biopsy and then I'll be meeting with a new Oncologist for a 2nd opinion. I like the current one. I just think a 2nd opinion is wise. Don't you agree?

Ryan's Health. We had the consultation with the Pediatric Surgeon today. He sure is a great guy. He explains things SOOO well. His surgery will be on Wednesday at the hospital close to our home. We'll be there till at least Friday, but it will probably be Saturday before he is released.

Wednesday, November 18, 2009

Lymphoma Update

I just received a call from the Dermatologist's office. You probably remember that last week they did biopsies on all the lumps on my back. The results are in and they are all lymphomas. I think that means I'll radiation therapy from my neck all the way down to my lower back. But I'm not sure. I'm on my way to drop off the little ones and then I'll be going in to visit the Oncologist. I'll let you know what I learn.

Later today I'll tell you the other crazy thing that we found out on Friday.

Tuesday, November 17, 2009

Our Co-op Friends

Today one of the Moms in the Co-op, Lolly, brought her face paint and did some work on the kids. This seems to be one of her many talents! Check out her work below. (You may want to click on the images so you can see the details.)
Amazing, right?

Not my strongest talent...

If you know me well, you probably know that I don't consider myself to be a very creative person. Yes, I knit. No, that doesn't mean that I'm creative. See, knitting is a science for me. If I do the right number of stitches and rows with the right gauge, then the project works. I almost always rely on other people for help with color choices.

Well, I have a friend who is an amazing gift giver. Do you have a friend like that? You know the kind that always gives just the perfect, unexpected gift. The gifts always have great meaning and are so special. Well, my friend gave me an amazing necklace that says, "All is well." I know I've mentioned it before. If you look through the blog, you can even see a picture of it. If you read that post, then you also know that with the necklace came a very special quote.

The quote was on a small piece of paper with a ribbon. I thought it deserved more prominence and then thought maybe I could frame it for my friend. I had a vision in my head. But in normal Tina style, I had a hard time translating my vision into reality. I felt so frustrated by it. I wanted to give my friend a gift that would be meaningful. She doesn't need anything. She can buy anything she wants and I wouldn't even have the slightest clue what to buy her. (If you haven't already clued in, I'm not a good gift giver.) Anyway ... so, after several attempts, I had a little emotional breakdown. (Poor husband.) So, I just put it away and thought I had probably just wasted some money and would still have to come up with something.

The next day I decided to try again. Okay ... not to toot my own horn, but I'm pretty pleased with how it turned out. So, I thought I'd share a picture with you.

Monday, November 16, 2009

Today's biopsy wasn't so bad. Not fun, but not bad. Thanks, Dr. Shows ... I mean, Dr. Atkerson! :)
On my way to yet another biopsy. I'm not looking forward to this. I hope it doesn't hurt too much.

Sunday, November 15, 2009

The Results of the MRI and the Neurologist Visit

I returned home today from doing a 48-hour study with Ryan. Immediately following Ryan's neurologist appointment on Friday, Ryan and I checked into a beautiful Marriott suite. I spent 2 days tracking when and how much Ryan eats, sleeps, pees and poops. Because Ryan eats, pees and poops very little, and sleeps a lot, I spent a lot of time watching meaningless television shows that I'd never watch at home, knitting, and sleeping. It was very relaxing!

Dwight stocked the room's full kitchen with healthy food and some fun snacks, and a dear friend brought me a delicious dinner and super yummy treats on Saturday evening. So, I had wonderful food and lots of sleep. What more could a mom ask for? :) (Thank you, Sweetheart for taking such good care of Ryan and I.)

So, on to what you probably really want to read about....

We went to the neurologist appointment on Friday. We only had to wait for 3 hours. Yippee! So, here's the gist of it... There were differences between Ryan's 4-month MRI and this 15-month MRI. There are some abnormalities related to the white matter and probably some lesions. You might remember that there were some delayed mylenation issues on the first MRI. There has been additional mylenation since the first MRI. That's a good thing. Because of the additional mylenation, they were able to tell that there are some lesions on the brain. This isn't completely surprising to us since we had heard they suspected this in the NICU.

The basal ganglia looks fine. (This is really good news since it is the most sensitive area for mitochondria disorders and mitochondria disorders are not good news.)

The radiologist and neurologist feel the results of the MRI are consistent with inborn errors of metabolism; however, it is not a classic example of inborn errors of metabolism. Thus, it is not a definitive diagnosis. We might be able to get more information by doing a muscle biopsy and a spinal fluid analysis. However, these are both extremely invasive and they aren't really medically warranted. I chose not to do either of the tests, at least not right now.

So, we'll wait another 6 months to a year and then do another MRI. We'll again compare the MRI's and see what we learn. Hopefully, it won't take 3 weeks to get the information.

In 2 weeks, we are going to also do a thyroid and iron study, which will be done with a blood test. Additionally, we're going to do an EEG on Friday.

On other topics, while I was with Dr. Seals, we discussed Ryan's seizures and his feeding issues. Since Ryan started the Lamictal, the Myoclonic Jerks have significantly decreased. (Remember when he was doing 60-70 in 20 minutes? He's now down to about 2-5 per day.) So, we're going to decrease the Keppra and the Lamictal to see if we can do less medicines and still keep the seizures away.

I also reported that Ryan is eating less than 20 ounces of formula each day and sleeping somewhere around 20 hours. This has been going on for about 3 weeks. He had been eating around 45-55 ounces each day. Well, in tracking his eating this weekend, I've learned that he's actually eating about 13-14 ounces each day. I was told that he needs a minimum of 800 calories per day. He's only getting 390-420 calories. So, we are going to move quickly on getting a g-tube in place. Dr. Seals also recommended doing a nissen wrap to help with the GERD issues. I'm not thrilled about doing the surgery, but I think it is nessary at this point.

So this will be another busy week ... another biopsy for me, an ophthalmology appointment for Ryan, an appointment with the oncologist and the rheumatologist for me, an EEG for Ryan, and an appointment with the pediatric surgeon. On the bright side ... this week should go by fast. :)

Please keep us in your prayers. I know my strength comes from all of the prayers. Thank you!