Wednesday, June 29, 2011

Things have just been really stressful around here and there is always so much tension in the house. So, yesterday we said to hell with it and packed up the van and hit the road! We went to Duluth, MN and got there around 4pm.
The first stop we made was at the place called The Depot. Which is a train museum! Buddy is obsessed with tractors and trains, so needless to say he was in heaven!
 Buddy the Conductor! he was in LOVE with the fact he could "drive" this train. It even made noise and lights flashed! it was crazy!
 the passengers :)
 Buddy in the Mail Car getting ready to deliver mail! :)
 He wanted this car too 
 Grayson was all shaded so the sun didnt get to him hehe! remember-he can not be in the sun with the meds he is on! :)
 Leading the way :)
 In their museum, hubby's unit :)
 Some crazy carved furniture
 Playing in the childrens center! It was soo cool!!
 And they think we're just fishin...
 Row, row, row your boat...

 Some of the little shops they had, love looking at old stuff :)
My boys driving the train! "All Aboard!" as buddy would say ;)
Then after we were done here (and yes, we had to drag buddy out of this place!), we headed to the lift bridge and this is what we came to see. Well actually we just wanted to walk a bit and see the lighthouses but we had perfect timing and the bridge lifted for these....

It was nice to get away and get a restart on our minds! We headed back to the cities early this morning and got a nice surprise when we got home, NOT! Graysons hair is now falling out, in chunks! Of course we knew this was going to happen but that still didnt prepare us for the actual  site of it. Just was like a punch in the stomach. 
Tomorrow morning Grayson goes in for Round 4! Emma and Buddy are still fighting a cold so they wont be able to go to daycare or go to the clinic. So, that means one of us will need to stay home with them while the other goes with Grayson. How the hell do we decide that one? Blah! 

Monday, June 27, 2011

The last few days have been crazy! Emma must have caught a cold at daycare (oooh lovely daycare haha) and she has been super crabby since! The whole coughing and snotty thing going on and she is NOT happy about it and lets us ALL know! lol. Well now she has passed it on to Grayson. He woke up this morning with a little temp. This can turn serious for him easily being he has the port in place. Its just and invitation for any kind of infection to start so I called the oncology clinic right away at 5am to let them know and see what they thought. His temp is really low 100.1, so its kind of at the "sit and watch" stage. Which is good but scary. Hes not very happy either. His sneezing really irritates him and hes been a cuddle bug all day. I really dont mind too much though hehe. Just wish the kids werent feeling so icky. Wyatt sounds like he is losing his voice now also. Oh the joys of summer colds!
Tomorrow we were supposed to go in for pictures at Childrens, but now with sick kids I think its a no go. So sad! Its a special set up they do at the childrens cancer center and the pics are free. Not much we can do though, I dont want to bring the kids in there all sick and possibly spread something to the other kids on chemo.
Speaking of chemo, while talking with the doctor at one point today, she said that Grayson's chemo is going to have to be lowered. Ive noticed his left eyelid is more droopy just within the last few days since the last treatment. This is a side effect of the Vincristin (spelling?) that he has been getting along side the chemo and they will need to cut back on the dosage the next round.
I feel so overwhelmed with all of this. I feel hatred some days and I don't know who to really direct it at so I just have "bad" days. This whole situation just messes with my head. I need to be strong and also have those random break downs, but when I want to, I cant. Its like Ive gone numb. I know its going to get worse before it gets better and I think maybe this is why I feel numb because I know next week will be worse.
It all seems like a horrible nightmare...

On a good note, we have some really amazing people in our lives. They KNOW who they are and we love and appreciate everything you all are doing and have done for our family! It means the world to us and really helps us get through each hard day.
Click on the picture of the benefit to get all the info :)
We sure miss the girls (Riley and Lauren)!! Sure hope Grayson starts to get a little better so we can at least make one trip to see them (half way maybe) and spend a lil mini vacation and do some camping. I really dont think this is a possibility anymore but we will see :)

Thursday, June 23, 2011

Today was round 3 of chemo for Grayson. The appointment didn't go too bad, although Grayson was a little feisty and irritated. Things went pretty smooth for the most part. Grayson has to wear a little patch on his back now to also help with the nausea. Now he is starting to get the effects with it. Hes lost some weight and now we need to be careful because his immune system is definitely down. Need to watch for a lot of things like a fever (anything over 100.1 we need to bring him in right away), and kind of rash...and pretty much anything abnormal. They also said not to be surprised if next week he cant get his chemo treatment due to blood levels being too low. They said the chemo is doing its job and his levels are way down, so just need to watch it closely and hope he doesn't need a blood transfusion too soon. But that is also expected.
So this is what our life consists of now, appointments on Jesse's days off work and making sure to keep a close eye on Grayson in case we need to bring him in. It seems like Thursday through Monday are "sick" days for Grayson then by the time hes getting back to being himself, we have to head back in for the next chemo round.

Wednesday, June 22, 2011

Been really busy around here. Seems like there just are not enough hours in the days lately. I have piles of paperwork that I need to fill out for Grayson and have slowly been getting that done. Its super annoying to do because I need to look up stuff (all his meds names) and super hard to do while taking care of a clingy Grayson and also a clingy Emma now. Wyatt always is busy being that he is 2! He soooo funny! His imagination is really quite hilarious!!
We've been trying to still live a some-what normal life with Grayson now being on the chemo treatments but its kind of hard. We have took a trip to the zoo and the kids loved it. Grayson really liked going through the fishies.
For Fathers Day we didnt really do much. Just was an off day for me so I didnt have the energy to do anything special. I seem to have days like that more often now but since Ive started embroidery in the shop Ive been forcing myself to stay positive and busy.
 "This is what Spoiled looks like" made by mommy :)

 This was what they wore for dad on fathers day. Emma's shirt says "Mommy's doll Daddy's Treasure" and Grayson's shirt says, "Dad's #1 Fan" :)
 and the writing and ribbons are gray, not pink lol my camera made them look pink hehe
Emma's first piggies :)

 Im terrified of heights sooooo, I hated that buddy made me take pics of these animals! LOL 
Tomorrow is round 3 of chemo for Mr. Grayson. 

Thursday, June 16, 2011

Today was round 2 in chemo for Mr. Grayson. We really werent sure what to expect. He was sick and in lots of pain this last week. Im just really hoping that was in part to blame on the actual surgery and port placement and not the chemo treatment itself. Otherwise we are in for a long year! 
This time around I feel that its going far. Some of the side effects are him being dizzy (which we notice when hes trying to crawl, he usually gets weak and falls over) and headaches, nausea, jaw pain (which hes had really bad, to the point he wont eat).  Being he cant talk, its super stressful just guessing what is wrong. 
This last week was total hell! To say the least!
Today was the first time we've seen them "access the port." Um, the needle was just huge! We have this numbing creme we put on the area before we go into the appointment and apparently it does what it says because Grayson didnt even flinch when she stuck it in. Jesse and I couldnt really watch. I did...but I dont really remember seeing it. Lol my brain blocked it out I think! 
But the treatment went well for the most part. Grayson was being his happy playful self and hes only had one dose of tylenol 3 and the anti-nausea meds. Hes supposed to get really sick and icky feeling today-the next few days. 
Hes such a little fighter! <3

Friday, June 10, 2011

Kind of another stressful day today. I think the emotions were higher then yesterday, being things are kind of sinking in. For me anyways... Not something I think I will ever really get used to. I don't want to let myself. It was hard to find the positive at times today that's for sure.
Think I'm still almost numb to this whole situation. I have meds to give, we need to monitor him to check for all kinds of symptoms that can be allergic reactions to the meds or even the chemo. I just feel overwhelmed and still a little angry I think. It just shouldn't be happening. My son shouldn't be on chemo, its just not fair!!
Grayson wasn't himself today so that made things worse. He was really tired and didn't smile and play like he usually does. He seemed like he was still in pain a bit so, even though i don't want him on the pain meds much, he needed them today again. The area where the port is seems to look much better then it did last night. Its bled a little but nothing too bad. The oncologist did call this evening and I asked her about it and she said that we need to keep an eye on it but sounds like its normal for a little bleeding. She wanted to make sure his appetite hadn't already decreased and I really don't think it has. Hes sleeping more so in a way eating less, but not a loss in the actual appetite. The oncologist said that most likely he is just still in a little pain from the placement of the port, and hopefully he wont be like this after each treatment. I really hope he doesn't get sick each time :(
I do like that they seem to keep in close touch with us (the oncologist). Just things are a little crazy around here now. I feel like now that he started chemo, we live a new life. Jesse's days off work are now not days to go do family things, they are days for doctor appointments. And now that the longer Grayson is on chemo, the more prone to illness he will be, I feel like i need to set up some kind of area right when you come into the house for people to scrub themselves down lol. Have sanitizers and all that fun stuff! I want to go through the house and completely declutter things and just make life as simple as i possibly can! Just need to find the motivation for such things hah!
Also we are going to be setting up a trust fund for Grayson. When this is ready we will let you know all the details :) We were advised to set up a caring bridge site but I'm not sure if I will do that or just keep the blog.
And also the nurse said that most people set up a list of things they will need and people can mail them (ex. Clorox wipes) this something we should do?
Well enough for mind is spinning like crazy and I'm still out of it I think. Running on empty :(

Thursday, June 9, 2011

Today was a very long and stressful day. We were up at 5am and dropped Emma and Wyatt off at daycare then headed to Children's in Minneapolis for Grayson's port placement and first round of chemo. We were there at 7am and got all checked in and ready. This time we had a good experience over all! Thankfully!! 
He went in at around 9am for the surgery and was done in exactly 50 minutes from the time he had left us. But he had to wait an extra 45 minutes in the room with them before he could come to us. It was hard to stay busy while waiting. Just seemed like time stood still. 
 on the way there
 chillin with mommy in the waiting room
 I see Graysons birthday!! Do you? ;)
 Hi world!! 

Finally he came back into the room and right back in my arms! He went right back to sleep lol! We had to wait over an hour for him to wake up a bit so they could take his IV out and "discharge" him over to the oncology area which is in a different building. 
 still sleepy
You can see his heart shaped bandage. The surgeons trademark :) nice little touch! and he was a very nice guy!
He has the heart bandage over one small incision and on his chest is the other incision where the port is actually at. Its a wider cut and you can see a lump where it is.  This is where they stick a needle each time to administer the chemo. 
We got over there and they had to do blood work. They can get labs right from the port so that is nice. No more poking around to find a vein! So they do the blood work to check all kinds of things, and this will need to be done each week right before the chemo. If his blood count is too low then they wont be able to do the chemo that day. We were informed that almost all the babies that get chemo will need at least one blood transfusion within the first three months of starting. So now we are worried about that! :(

But his labs were good this time of course and we started chemo. It is like an IV drip and it takes an hour and will each time. He was so worn out from the surgery that he actually slept through this round! So nice!! 

Also the from the chemo he is expected to lose his hair, lose weight, and be more likely to catch something (viruses and such) being that his immune system will be low. He was also sent home with 6 prescriptions; nausea meds, stool softener, Tylenol with codine, numbing creme, antibiotic to help prevent pneumonia, and one for acid reflux. So I need to get some kind of calendar just for meds or an app on my phone to remind me! 
It was a long day though. We got home around 6-630pm. I am super tired! Emma and Wyatt didn't nap at daycare all day either. I think Emma was worried about Grayson because as soon as she seen him she just kept staring at him like she was wanting to know how things went lol. They are so cute! 

As far as how long he will be on treatment...he goes in every Thursday for 10 weeks (2 and half to 3 hours each time) and then its 4 out of 6 weeks for i don't remember how long. Long time though.