Switching to Caring Bridge

Hey all....I've decided to change over to CaringBridge for Mathias' updates. I think it's easier to use and the pictures show up larger...people can sign up as visitors to the site, etc. I still need to go and upload a bunch of pictures, but here is the site link:

http://www.caringbridge.org/visit/mathiasthorpe

Finally Home

So, we went in on Monday at 7:30 and his counts were high enough...Hgb 11, platelets 75, and ANC 650. We were on the plane by 1:00 and home by 2:00. I unpacked the next morning and went back to work. It is so nice to be home and sleep in my own bed.

Mathias is a bit overwhelmed with the adjustment, but he is doing great. He didn't want to sleep in his bed the first night because he was so used to sleeping with me, but the last two nights he has done well with bribery. He will go back to daycare on Monday and I think that will be really good for him.

Mathias will start Maintenance on Wednesday of next week, so until then his body will be drug free....the last rest for his body for some time. Thanks everyone for all your support.

We still can't go home

We had a bad day today. When we arrived to the clinic, Mathias didn't feel well. His pulse was racing at 155 beats per minute and he said his tummy hurt. The nurse accessed his port and sent blood to the lab. While we were waiting for the results, Mathias threw up all over himself and all over me. He hasn't been eating...just drinking cranberry juice. So we smelled like barfy juice. I was caught off guard, because this is only the second time he's vomited in his life. First time was on grandpa, but I was the lucky winner today. After we toweled off the best we could, we got the lab results. His Hgb had dropped to 7 again, so he needed another blood transfusion.....and his platelets dropped to 11, so he needed his first platelet transfusion. The number they transfuse at is usually 10, but since Mathias had been bruising so easily, his gums were bleeding for no reason, and he was developing petechiae, they decided to transfuse him. The good news we received from his lab results was that his white count had gone up and his ANC was 400.

We are now back at the Ronald McDonald House and Mathias told me he feels a lot better. He still isn't eating anything for me, but I'm hoping he'll start. I just gave him some more cranberry juice, so hopefully that doesn't end up all over me again! We go back into the clinic for labs on Monday and hopefully by that time, Mathias' marrow will be making his own cells and he can hold his own. If that happens, then we will be on the first plane available.

No luck today

We are not able to go home yet. Mathias' Neutrophil count was zero and his total white count was 300 (normal range is 5,500-15,500). His platelets were 36 (normal 150-450). Because of this, he is at severe risk for bleeding and infection and we cannot go anywhere. When we arrived back to our room at Ronald McDonald House, the front of Mathias' shirt was covered in blood because of oozing from his needlestick at his port site. I had to put a dressing on and hold pressure to stop it. I'm scared to let him walk around or do anything because I don't want him to fall or bump something and bleed. I'm scared to let him leave the room at all because he cannot fight any type of infection. I'll feel much more relieved when his numbers climb a bit. At least so far he has not had any fever (knock on wood). If that would happen then we would be admitted and be stuck here for more time. As is, we go in on Thursday to re-check his counts and hope for some improvement. Until then, I just get to sit here and watch for bleeding or and temps and try to keep this active two year old from doing anything......yeah right....... Keep praying for us.

Still hoping for the best

When we went in for Mathias' appointment on Wednesday I was a bit discouraged. His Hgb was 7 and he needed a blood transfusion. He platelets had dropped significantly and his ANC was low at 400. Mathias seemed to feel fine though and we got his chemo, the blood and then came home. It was a long day, but at least we made it through. The nurse practitioner said that in order for him to be able to fly home, his Hgb must be 9 or higher and his plateletes 50 or higer. There is a possibility they would give him another transfusion to boost him up for the trip. So I'm hoping Mathias still feels good Monday and that he isn't running any fevers or anything. My next hurdle will be to see when the airlines can find us a seat on a flight. So many variables, but I'm still hoping to leave as soon as possible. I've been cleaning our room, vacuuming, cleaning the fridge, microwave, doing laundry, etc. It's amazing how much stuff we've accumulated while we've been here and I'm hopeful I will be able to fit it all back in our suitcases. If I was thinking, I would have sent some items home with people when they were here visiting. On that topic, I want to say "Thank you so much" to everyone who came to see us during our stay here. Mathias and I really appreciated it. We enjoyed seeing everyone and having a break from the same routine here.

Hoping for a good Wednesday

We go in tomorrow at 10:00am. Mathias will get a cbc and his dose of ARA-C. Hopefully his counts wont be plummeting. He looks really tired today...I will post a picture I just took of him. He was too tired to eat his supper. He has noticed that the skin is peeling a lot off of his hands and feet and it kind of bothers him. He keeps peeling at it and showing me. Other than that and some severe leg and back pain and his hair loss, he has gone through this phase pretty well. He's been a bit worn out, but for the most part he is pretty happy and playful. I will post his counts tomorrow...I'll be devastated if we're delayed coming home.

Feeling punky

So, Mathias made it through a rough week of chemo. He has amazing energy and spirit considering what he's been going through. Mathias receives an oral chemo every night now and it's one that is hard on his liver and also one that his body may have problems processing due to his issue with the enzyme that processes that drug. Mathias also received intrathecal chemo and several different chemos in his port on Wednesday.

They sent him 'home' with me with his port still accessed and I administered his chemo this past Thursday, Friday, and Saturday. That went well, but I was paranoid about him being so active with a needle stuck in his chest for those days. He would run and play and sometimes accidently bump it and then it would be sore.

Saturday I removed the needle from his port and he will be needle free until Wednesday when we go in again to start the four day course of ARA-C again. Then, next Monday we go in to check and see where his counts are. As soon as his counts are high enough, then we will be headed home. I wish I knew what to expect, but I have no idea where his counts will be or if we will be delayed. I am praying that we wont, but I can tell that Mathias is a lot more lethargic today than he has been, so I'm worried that this round of chemo is catching up to him. Today he woke up ok, but he only at a couple bites of cheese and drank some cranberry juice. It is now 5:30 and he's had nothing more to eat! He refuses everything I offer. He slept for about 4 hours mid day, and he hasn't been taking naps lately, so that's different. He is now content to sit on the bed and watch 'Meet the Robinsons'. I think he looks pale and tired, but I guess after all the drugs we've been pumping into his poor little body, that is what should be expected.

A friend of mine visited this weekend and brought me a bottle of wine. After all the stress I've had of late, I wanted to open it up....and after watching the pitiful Vikings game, I needed to drown my sorrows. I had nothing to open the bottle with, so I used a can opener and pushed the cork inside the bottle. When the cork went in, the wine squirted all over me and everywhere, but the important thing was I was able to access the wine. I am currently drinking my wine out of a styrofoam cup....I've learned to make do with what I have for now! Mathias thought I was crazy. :) He just now asked me for tacos, so that's a good sign...I better go feed him while he's in the mood.