Tuesday, July 29, 2008

Whew!

What a day, we left around 6:30 this morning to get there in time for blood drawn and a iv put in before the MRI. It usually takes about 30 minutes for Marcus to have his MRI, but today it took longer, and Marcus said they did something different that they don't normally do. To me that indicated a red flag.... After going to get some breakfast and browsing some stores, we went back to clinic where it is ALWAYS a long wait. We sat and talked to Lynn who is the Brain Tumor coordinator/nurse practitioner. After waiting for about an hour, Lynn told us that the Dr.'s were down in Radiology discussing his films with the radiologist.... Another thing to make my stomach turn. They don't do that too often. FINALLY, Dr. Yaish came in and said that most of the scan looks good. There is one part on the scan that indicates that there is some swelling, or thickening but no enhancement which means it is not growing quickly. We are just going to have to watch it closely.
As far as his symptoms, I am pretty sure they are caused from stress and the medication he has been on. We are going to play around and see if taking his pill earlier at night will help him in the morning, plus he will be eating some crackers before he gets up (yeah, just like good ol morning sickness).
By the way, Dr. Bruggers is back!!!!! YAY! She came in and talked to us for a while. She went down to see the scans with Dr. Yaish so I feel so much better to have her back. She looked quite pale so I think she has been very sick, but no one knows exactly.... well, no one says anything. She kept saying the scans look "encouraging", so that is great. She is the one that I really like and I feel like I can trust. I hope she is able to come back full time and able to be around when we need her.
All I can say is.......... I am soooooooo tired of this roller coaster ride. It really is hard on us mentally and physically to go threw a day like today. I was expecting the worst, especially after all the waiting for Dr.'s and knowing they were looking at the scans downstairs, I was expecting him to say.... "its back". Dr. Bruggers said that if his symptoms get worse in the next few weeks that they will do another MRI then. She said, "after all.... we are dealing with a nasty, nasty tumor and we know it can do anything anytime." That also puts so much pressure on me, I should say us, but I am the one that makes the decisions as to what we let Marcus do. He has 3 more days of all day Marching band, it is hot and then I have to let him go to Snow College in Ephrim, Utah for 6 days? UUGGHHH.. I hate not knowing what to do, how can I NOT let him go? It is his last year in Band, if he doesn't go to Band camp, he is out of the band because that is where they learn the whole show. I HAVE to let him go!

Well, enough rambling.... we made it and he is OK!! WHEW! Hawaii HERE WE COME!

Sunday, July 27, 2008

Update... Still waiting!

Well, friday I called first thing in the morning to the Oncologist's office and was only able to talk to a nurse practitioner. She said the office wasn't open until monday! I explained to her our situation and she went over Marcus's chart. She was really nice and kept telling me "I know you must be so worried". She suggested that they could move up his MRI to this next week, but other than that, it would be up to us if we thought he needed to be seen in the ER. In the ER they would only do a CT-scan that would pick up any fluid on/in his brain. An MRI they will be able to see things a lot clearer. Marcus is still feeling sick in the morning with some headache, but he hasn't vomited again. We decided to wait and go to clinic on tuesday for an MRI and to be able to see Dr.'s who know him. If he gets worse and starts vomiting, I will take him to the ER in a heartbeat.
For those who don't know why this is an urgent thing; headache and vomiting could be indications of some kind of pressure on the brain, or that there is some kind of fluid on the brain like water, or it could be some kind of blockage that is causing the spinal fluid to build up in the brain.
We are also looking at the possibility of this being a side effect to the seroquel that he started about 6 weeks ago. I really don't know a lot about medications, but it does say that it can cause headaches, nausea, and dizziness. I always thought that the side effects of meds would show up the first few weeks of starting it, but I could be wrong. I hope this is just a little hurdle that seems really big right now.
I will post hopefully tuesday night. His MRI will be at 9:00 AM.

Friday, July 25, 2008

Hang ON..... Here we go again!

Please sit and wait for the lap bar to lock into place.....Please keep hands inside the car during the ride...CLANK, CLANK, CLANK....

Remember that feeling of going on that big ride, the big roller coaster and half of the ride was just climbing to the top? The anticipation, the knowing what you are going to experience, but yet not sure if you are ready for it. This is how I feel when things with Marcus start going ways that we aren't sure what is really going on. Of course it is not a good anticipation, but I get the same sick feeling in my stomach and almost like my body is getting ready for an adrenaline rush.

Well, here it goes. Last April Marcus had an MRI... stable. Just a few weeks later, he started having head aches and pains in the back of his head. They did a CT-scan to make sure that there were no broken blood vessels...came back stable. So we went to our Pediatrician and he figured it must be from stress. At this same time Marcus had been taking medication for his behavior issues, changing them here and there. About a month ago, I noticed that he was having a hard time keeping his balance when he got up in the morning. I figured it must be the medicine cause it does have the side effect of "dizziness". He has still had head aches on and off, but took meds and it goes away. Now it has been 2 weeks or so... more frequent headaches.... (must be stress from being section leader in the band). This week... waking up with heaches and nausea, 3 days in a row. I do not want to over-react, so I let him go down to Salt Lake for the day's of 47 parade where they spend the night. He calls me that night at 10:30, just vomited. Says he feels OK, goes to bed. First thing this morning... I call, Marcus says he feels fine.... takes a shower, calls me back. Mom, I feel sick/headache. He really doesn't tell me that his head hurts unless I ask him. But every time I do, he has one somewhere or just had one. I drive all the way down there to pick him up, call Primary Children's... none of the clinics are open cause it is a holiday. I talked to a nurse practitioner, tells me that it is not urgent, but to call first thing tomorrow morning. Came home... more headache, took meds, feels better. Tonight... around 10:00... I feel sick to my stomach again Mom. My heart stops when I hear him say that. Twenty minutes later he walks in and asks... Dad can you give me a blessing, I just don't want to be sick anymore and I am sure that will make it go away. Now I know he knows........ he is scared.
Two years ago today, I was taking Marcus in to the hospital for "dehydration" from the Parade, with headache, nausea, vomiting, and backache. Looking back I am sure it was from the "B" word along with some dehydration. The last 2 whole years, Marcus has never gotten sick... not even a cold or an infection while going through his treatments. (except shingles) Even with his blood counts so low, he never got sick. He NEVER vomited, not even while taking Chemo by mouth every night. He felt a little woosey, but never vomited. The last time he did was almost 2 years ago. Just a few days before his diagnosis.
I am praying for strength, courage and for whatever lies ahead of us tomorrow, please do the same.

Sunday, July 13, 2008

I am an Aunt.... AGAIN!

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Don't ask me how many times, but each time it is exciting. I love being the Aunt. Alice, my baby sister just had her 4th baby on July 10th. His name is Joseph Hyrum Vivaldo, 8lbs, 3 0z. What a cutie! I just wanna hold him sooooo bad! But, I can't....they live in Tucson, Az and I just cannot make it down there to see him anytime soon. I have been wanting to smell that baby so bad!!!! He has those cute little rolls that my babies, (except Noah) had. I feel the need to do some nibblin' so bad!

Wednesday, July 02, 2008

A Cool Pool!


Well, we finally got some hot weather (95... close to 100!) So luckily most of the stores have their pools and things for 1/2 off. We went for a pool we can empty right after we use it, and big enough to get wet in. It is 2 1/2 ft deep and deep enough for little Noah and Jackson. Bailey, unfortunately she is way too tall for it. She is only 9 and pretty close to my height, so she has to kneel to get in it.... poor girl. They are good sports and love to get wet, no matter where or what kind it is.
Last summer the pools got really bad. There was a huge out break of crypto here in Utah. I know, pretty nasty.

But thats what happens when no one has their own pools and everyone goes to the public pools to swim. I have tried to keep my kids away from the public pools, there are just sooooo many people!
Yes, my boys do have "farmer tans". After all, we do live in the Farm Lands here and when it wasn't even warm enough to swim until June, then this is what you get. I am sure by the time July is over (we are supposed to hit 100 on the 4th) they will be brown little buggers, just like last year. Hey, they never wear shoes so their feet are tan at least!!


Here is Jackson using the goggles even though he won't go under water unless he accidentally falls in. Which is hilarious in itself because he will have this look of total FEAR on his face, then when he comes up acts like he was cool with that and that he meant to do it. Funny boy. I have never had a kid that tries to be so tough and invincible as Jackson does. I know he is the youngest of 4 boys, but he sure won't let anyone know he is hurt. He is the only one that stands up to Marcus, and that causes so much conflict.


This picture totally depicts Noah. So laid back and just along for the ride. He does have to put Jackson in his place here and there, but he takes Jackson with him almost everywhere he goes. No matter what friend he goes to play with he always asks if he can take Jackson with him. I just can't imagine what they would do with out each other. They seem lost when the other is gone. Kinda scary, but through these last couple of years, they have learned to depend on each other.
I enjoy them all so much!