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.

Today was a 'Go'

It is now 2:50pm....we just got back from a long day at the hospital. Mathias' ANC was 1100, so we were good to go. He did fine with the Lumbar Puncture, but now I'm going to be scared because this is the first time he has received the Methotrexate since his siezure. I am going to have to watch him closely.

We had to sit in the infusion center for around three hours after his sedation for him to get his other IV chemotherapy drugs and he was still a little goofy from his sedation, so that made for an interesting day. There were a lot of older people over there getting their chemo and there is nothing separating the different patients other than a curtain, so I was a bit embarrased by Mathias' behavior. He was shouting, singing, laughing, roaring, burping, pooping....you name it, but everything he did was LOUD. Some people got a kick out of it, but I think others were a bit annoyed. What can you do when you're dealing with a two year old? He kept shouting "Hey nurse!! Where are you?!"....then she made the mistake of telling him her name, because then he kept shouting for her. At any rate, I was SO ready to go.

I took some pictures of his LP today, so I will add those pics.....

Today was a "No Go"

We couldn't start Mathias second part of this treatment phase because his counts were not high enough. His ANC was 600.....so I'm trying to look at the bright side in that the number is higher than it was on Friday (200), and hopefully it will be recovered enough by Wednesday, when we're going to try again.

Low Counts

So...we made if off the steriods on Sunday and it took until Wednesday for Mathias to sleep through the night. It is now Saturday...a week off the steroid and he is still asking for pepperoni and cheese. It seems the high dose really did a number on him this time. We are supposed to start the 2nd half of this treatment phase on Monday, but we can only start if his Neutrophil count is 750 or higher. Unfortunately we're below that right now. He got a fever on Thursday night and we spent all night in the ER with IV antibiotics. His ANC was 500 at that time and then later on when we went in for his next IV dose, his count was down to 200. We are still going to go in on Monday to check and see if there is a remote chance that his count recovered enough to go. If not, his treatment will be delayed and I'm really worried about that. We are lonely and ready to come home now. I don't know how we'll deal with a delay....

Another Steroid Week

Mathias did well at his treatment this week. He doesn't even cry when they put the needle in his chest anymore. He wants to help when he can and the nurses let him push the syringe when it's time to flush the line. He's back on the steroids and this morning he woke up at 8:00 asking for tacos. We're now all out of them, so I think I need to make a run to the store. So far he hasn't been interested in bacon, which is interesting. So weird how his cravings change. He has been saying he has a tummy ache, so I think I'm going to call the doctor. They said he may need an antacid when on the Decadron, so I think I may call for that.

Mathias' hair was looking pretty crazy again, so I gave him a bit of a buzz cut that now really accentuates his balding head. I think he looks really cute though. Mathias also has a crush on a girl here. I'm guessing she's around 9 or 10, but that doesn't stop Mathias. He stares at her and tries to play with her all the time. When she's not around, he keeps saying "where's my girlfriend"....so cute.

Passing the time

So Mathias and I are pretty bored. This is a nice place to stay and all of our needs are met, but we are really looking forward to this all being over. Our day usually consists of bacon in the morning, watching Schrek or Spiderman or Cars.....playing on the slide, playing store, playing video games, playing chase....eating more bacon, maybe a game of bingo (ha!), watch more spiderman, ride the bike again....eat more bacon, another ride down the slide......etc, etc, etc.



Mathias likes staying here, but the same routine is now old. I cannot complain because I've met families that have been here for a year! Crazy. The past two weeks have gone fairly quickly so I'm hopeful the rest will be the same.



Mathias has been feeling really good. His counts were still good this past week, but I'm starting to wonder what they will be like on Monday. I have noticed a lot of buises on his body and he shivers sometimes when he says he isn't cold. It's making me wonder if his counts are crashing or if it's just due to his running and playing so much. There's always something to worry about, but I see kids here every day that look so much worse than Mathias so I have to be thankful.



One other thing I've found about Mathias is he has been very outgoing while he's been here. He tries to make friends with all the kids and before when we were still in South Dakota and I took him to daycare once in a while, he was a bit shy at first. I think it's interesting that he is so outgoing here... He's also been a bit naughty. He's so full of entergy that he tries to hit me...he says he's a superhero and he uses his blanket as a cape and then I get the punch. I also have to watch what he sees and hears. The other day there was a different version of Spiderman on TV and he heard a new line that he immediately started repeating "I'll kick your little a$$!"....followed by some kicks. I told him it wasn't something nice for little boys to say and then later on in the main dining room with everyone around, he started announcing it again. Definitely not appropriate for the Ronald McDonald House.. :)



I will update again after our treatment on Monday...

Homesick

Mathias woke up this morning saying "I want to go to grandpa's house, I want grandpa, I want grandma". I felt bad for him. He had a treament today that was a shot of Peg Asparaginase. The amount is apparently a lot for just one site, so they gave it in two injections...one in each thigh. There were two nurses, so he got them at the same time so that was good. He didn't feel very well today after that and complained that his tummy hurt.

As far as eating goes, he only wanted bacon today, so I fried up an entire package and put it in baggies in the fridge in our room. I'm trying to be prepared. They had bingo tonight (I feel like I'm living in a retirement home!) and the prizes were toys. Mathias tried to nab the toy he wanted without playing, but I got a card for him and he was patient enough to play and luckily we won pretty quickly. He was so tired that he fell asleep by 8:00...I'm thinking I should be trying to sleep because he'll be up early again....and probably demanding bacon!

Ronald McDonald House

We started Mathias' new round of chemo yesterday. He did not get the Methotrexate intrathecally, but rather ARA-C. He also got some other new IV chemo drugs. The rest of his hair should fall out soon. We were able to get into the Ronald McDonald House right away and we are all settled there. We have a room with a queen size bed, a full size bed, and a chair that pulls out to a single bed. We have a small fridge and microwave in our room and there are blinds that close any time of day to make the room pitch dark, so that is nice for daytime sleeping. The people here have been really nice. Last night a group made a turkey dinner for us, but Mathias was more interested in playing with all the new toys. So far he is still feeling pretty good. They increased his steroid dose almost double what it was last time and he will be on it for the next 7 days..then 7 off...then 7 on again. He has already started eating more and asking for tacos. A few minutes ago he ate a slim-jim, followed by a fruit snack, followed by cheerios, followed by a bottle of formula. Makes my stomach churn, but he just fell asleep, so I guess it hit the spot for him.

Home at last

On Tuesday, Mathias' ANC finally jumped up to 1000. He had gone without a fever for days and they sent us home. The final word on his condition is basically the physician's best guess. They believe that the antibiotic Imipenem, which can lower your threshold for siezures, along with the changes in his brain due to the Intrathecal Methotrexate chemotherapy treatment..was the cause for the seizure. Unfortunately, Mathias will need to have many more treatments of the Methotrexate to treat his leukemia. The incidence of relapse without that drug is very high, so the physicians say that the benefits outweigh the risks. They just will not give him that same antibiotic again.

They were not able to tell me for sure that Mathias' changes in his brain will not be progressive and get worse, but they did tell me that they believe that the changes we are seeing are benign and not surprising to see in a child receiving the chemotherapy he has. Mathias is scheduled to receive another intrathecal dose of Methotrexate on August 11th and I am scared about that. I am thankful that I will be in Minneapolis when that happens and close to the treating physicians.

The most important update here is that after more than two weeks, Mathias and I are at home. Mathias feels better than he has since probably early March and he has been running and playing and smiling and feeling really good. I am thankful that he is able to have a little rest and feel good for a while before we start this next phase on August 11th.

Thanks to everyone for your calls, texts, e-mails, letters, and cards. It's nice to know you are all thinking of us.

-Krin

Crazy Few Days

OK....after my last post, a lot has happened. Because Mathias had a new temp and he was already on an antibiotic, they added another antibiotic, Vancomycin. Then his temp shot up to 104.7. He started experiencing cramping, diarrhea, itching, and high fevers. The next day they added Tobramycin and the symptoms continued and then they added an antifungal medication. I was staying up all night putting wet rags on him to try and lower his fevers. He was receiving Tylenol then Motrin then Tylenol every 3 hours. He would shake and shiver violently and get a red rash and itch and he seemed to be in agony. The nurses and I noticed his symptoms were cyclical and getting worse and worse and we discovered that Mathias was having a reaction to the Vancomycin. All of his antibiotics were changed and the fevers suddenly stopped. I was so relieved to see him looking better until...

Mathias had received another blood transfusion because his Hgb had been 7. He felt better afterwards and ate a banana. At four am he woke up and was fine...had a bottle and went to sleep. Then at 6:30am I woke up to feeling him moving oddly. I rolled over (he was sleeping in the bed with me) and he was having a seizure. His eyes were looking at me scared, but you could tell he couldn't control his body. His body was rigid and he was shaking all over and foam was coming out his mouth. I called for help immediately and held Mathias' head to keep him laying on his side. Everyone ran into the room and they shined the light in his eyes and both pupils were fixed and dilated and did not react to the light. Blood was coming out of his mouth because he had bit his tongue. After about 8 minutes of this, his seizure stopped and then we noticed that Mathias was only moving the left side of his body. He did not appear to have any control of the right side of his body. His pupils started to react around 7:30 and he moved the right side slightly. His right eye still was moving slower than the left. He was sleeping and unresponsive to my voice this entire time. Around 8am we took him for a CT of his head and at this time he suddenly moved all his extremities and he looked up at me and said "hold me mama". I was so happy to hear this. The CT showed diffuse changes in the white matter of his brain. The physicians decided he needed to be treated immediately by specialists, so they began making arrangements for his transfer to the hospital he is receiving treatment at...Univeristy of Minnesota Hospital-Fairview. At 11:00 the transferring team arrived and they took us by ambulance to the airport and the Sioux Valley plane flew us to Minneapolis. It was a quick trip because we were situated in Mathias' new room there by 12:55. Mathias had an MRI done right away and the physicians believe we are seeing a side effect of his chemotherapy treatment. We need to wait and see if this is confirmed by a neurologist, but they are calling it Methotrexate induced Leukoencephalopathy. I have a million questions, because Mathias still has a long way to go in his treatment and he is supposed to receive this drug in order to keep his leukemia from coming back in his spinal fluid. I don't know what they're going to do. Apparently this syndrom he's experiencing occurs 9-11 days after the Intrathecal administration of the Chemo. We were at day 11. I am thankful that I was in the hospital when this happened. If we would have been at home (or if I hadn't been sleeping next to him), he would have had the seizure alone and he could have choked.

It is 3:00pm on Sunday now and we've been here a little over 24 hours. I'm glad that I am here where they can treat him best. Apparently Mathias ANC is 100 today. I'm disappointed because I thought earlier it was 1000. Anyway, 100 is better than zero, so we will see what tomorrow brings. Mathias has not had a fever since he's been here, so I think the game plan is just to confirm his diagnosis, make a plan for his future treatment, and discharge when his counts are high enough. Anyway, the last week has been a huge emotional rollercoaster and I have no idea how I got through it. For a time there I thought he was going to die and that he'd had a stroke or that he had brain damage. I am thrilled at where we are right now. He has some slight changes in his speach, but I'm hopeful that will resolve on it's own. I'll update again when I know more. Thanks for your prayers. Feel free to call me. I'm bored in the hospital.

-Krin

Tuesday July 22nd

We're now on 10 days in the hospital. Mathias and I are so tired of being there. His temp was 101 this morning so that was bad news. His ANC is still 30 and we need to climb to at least 500 to be discharged. His Hgb is up to 8 so that was good and his Platelets are up to 42,000 so that was better too. Unfortunately his white count has not yet cooperated for us...I have posted some pics from this hospitalization.

Saturday, July 19th

Mathias went to Minneapolis on Monday, July 14th for his treatment. I knew there was going to be some issues when I saw that his heart rate was staying around 145 beats per minute while he was sleeping. His Hgb was only 6.6, so he received a blood transfusion. His ANC (a type of white blood cell) was 100 (they want it to be between 750 and 1500 to be theraputic). This basically means that he has nothing to fight any type of infection. The physicians stopped all of his oral chemotherapy and we were instructed to just watch for fevers. We had been fortunate that Mathias had not gotten sick with such a low count. It was funny that Mathias' body had adapted to functioning on such a low Hgb. The night before his transfusion, he was riding a trike and playing like nothing was wrong. That's what is so stressful....your child can look just fine and something can be majorly wrong!

Anyway, we decided to drive home to Sioux Falls so that Mathias could rest in his own bed. When we were 80 miles from SF, Mathias spiked a temp of 101 and I freaked. We went straight to the ER at McKennan and his temp there was 101.6 We were admitted to the Peds unit for IV antibiotics and to wait for his white cell count to raise so that his body has something to fight infection. So we've been in the big house for 6 days and I'm going nuts. Mathias ANC today was 60, so that's even lower than when we arrived!

This week was also the sterioid week for Mathias, so he's been eating plate after plate of bacon. Pepperoni is his second favorite item. He has stayed up until 1:00am and gets up early...he chants non stop "I want bacon" over and over until I'm ready to pull my hair out. He even has figured out that he can hit the nurse call light and request bacon, so I have to watch him. I know he can't help it...but's it's been a rough week. Last night was his last steroid dose, so I'm hoping his crazy food cravings will diminish.

I don't know how long Mathias will be in the hospital...his counts could jump up tomorrow, or it could take several weeks. I'm obviously hoping for tomorrow, but all we can do is wait and see. That's all for now...I just ran home to shower and I'm headed back in to the hospital. Unfortunately I can't update this blog from the hospital because it is blocked, so I will update the next opportunity I get to come home....

Sunday - July 6th

We just finished up the Holiday weekend. We've been so busy that I haven't beek taking time to post much. Mathias has been doing pretty well. He went to daycare two days last week, but he was so exhausted the 2nd day that he took a four hour nap while there. He loved being around the other kids and he was so happy to have some companionship his own age.

We had Mathias' benefit a couple weeks back and it was a real success. I feel a little less anxious knowing I have some money set aside just for his medical bills. I've been trying to pay for as much out of pocket as I can so that I stretch all funds to last over the next three years. I have no idea how it will all work out, but I am so thankful to everyone who has stepped up to help Mathias and I get through this. So many people who donated have never even met Mathias or I and I am so thankful that there are so many good people out there.

I am going to post some recent pictures of Mathias. His hair suddenly started falling out in handfulls this weekend. I don't know what brought the sudden increase in hairloss on, but he is leaving a trail whereever he goes. At this rate, he will be a baldy in no time. Although I know it's coming and he has kept his hair much longer than most kids in the same treatment do, it is really hard for me to see him lose his hair. It makes me think of Kyle. I have pictures of the two of them together where Kyle was pulling his hair out in handfulls too.

Mathias freaked me out this weekend when he all of a sudden started sneezing over and over and his eyes got extremely red and he had tears running down his face. He could not stop itching his eyes and he was miserable in a matter of minutes. He apparently had a allergic reaction to something, but I have no idea what. I took him home, gave him a bath, and some Benadryl and that calmed it down. Since then he has continued to have a runny nose, so now I'm paranoid that he's getting sick.

We will be going to Minneapolis in a little over a week for his next treatment. After that, we will go again on August 11th and stay there for 6 weeks. It seemed a long time away, but these weeks are going by pretty quickly. Anyway, Mathias is hanging in there and he continues to keep a smile on his face...which in turn rubs off on me.

Sunday - June 22nd

There has been a change in plans for Mathias' care. We will be getting the remainder of his intense treatment at the University of Minnesota Children's Hospital - Fairview. That facility was rated as one of the top pediatric oncology facilities in the US and they were able to take Mathias on as a patient with just a day's notice. I chose to go there for the critical/intense portion of Mathias' treatment and we will transition back to Sanford once Mathias makes it to 'maintenance'.

We went to Minneapolis last weekend and started Mathias' newest round of chemo with the U of M. I met with a nurse practitioner, a social worker, a fellow, and his oncologist. Everyone was awesome and spent a lot of time with me explaining everything. They were wonderful and I was very impressed. I am confident I made the right decision.

Mathias' newest chemo phase started on Monday and will last through August 10th. Mathias received a dose of chemo in his port that day and then he started some new oral chemo as well. Monday was difficult because I had to give Mathias 8 pills crushed up at one time. He was a real trooper because he had to take it in three bites and I thought he might throw up after each bite, but he kept it all down. We also had to give him the steroid again for a five day course. Thankfully we just finished the steroid for a while. Mathias was very irritable on the steroid and he had some odd food preferences. For days all he wanted to eat was bacon or tacos. I have been told that some of the chemo gives them a metalic taste in their mouth, so it is not unusual for him to crave foods with stronger tastes.

On August 11th we will need to travel to Minneapolis and remain there for six weeks due to the intensive nature of the treatement he will receive at that time. That phase is called 'delayed intensification' and it can be pretty hard on the body. Some of the drugs can knock his immune system to almost nonexistent and other drugs may cause his bladder to bleed. For this reason he may need to be hospitalized for a portion of the phase. Hopefully not, but he will need to remain very close to the facility for those reasons.

During this six week phase I am hoping to stay at the Ronald McDonald House that is only two blocks away from the clinic and hospital. We visited there this past week and it was really amazing. Mathias loved it and didn't want to leave. I am hoping that those six weeks pass quickly, because it will be really hard to be isolated during such a critical time. But I have quite a bit of time to prepare for that.

Mathias Benefit

There will be a benefit held for Mathias Saturday, June 21st. It will be held in Harrisburg at the Junior High School from 3:00-7:00pm. The benefit will consist of a children's carnival with inflatables, games, baloons, and prizes. There will be some nice items/prizes raffled off at the carnival. For the adults, there will be a poker tournament after the carnival. It will held at the Sports Zone in Harrisburg. The grand prize is a 32" LCD Flat Screen TV. All proceeds will assist with the medical costs associated with Mathias' treatment.

The carnival is being organized by a highschool classmate of mine and his wife. For more information, feel free to contact Tom Abbott at 605-413-5497 or Katy Abbott at 605-254-7100 or e-mail to letshelpmathias@yahoo.com

Sunday - June 8th

Mathias has been feeling pretty good. His appetite has really gone down. Today he barely ate, but he drinks a lot. I think he is slowly shrinking back down to his normal self. All in all though, he has been doing better than he was before. He makes me smile everyday with the things he says and does. He is changing and talking so much more. Today is my birthday and he sang "Happy birthday to Mommy" which made my day. His new favorite expression is "rock on" with his thumb up. He likes to tell me "I don't think so" when I ask him to do something he doesn't want to do. Mathias still has his hair, but you can definitely tell it's thinning. I'm hoping he keeps it, but I know he'll be adorable either way.

We found out that Mathias will no longer be able to be treated by the Pediatric Oncologist we were seeing. He is retiring and now the hospital where we have been receiving treatment will no longer have a pediatric oncology program. I have been in a bind over the last couple of weeks, trying to figure out what Mathias and I are going to do. We would either need to switch to the other hospital here in Sioux Falls, or travel to another city with a hospital with a bigger oncology program. Unfortunately I don't have the resources to travel to another city for the extended time I would need to, so my only viable option is to go to the other hospital here in Sioux Falls.

I am not happy about having to change our enitire routine that we had established and I feel like we are starting all over with this whole thing. I knew the staff in the clinic and all the nurses on the pediatric unit, knew where everything was, I had a certain comfort level, but now that's all gone and we start over. I did go and meet one of the pediatric oncologists at the other hospital and I liked him. He did acknowledge that they do not take care of a high volume of patients with ALL...I think he said they have treated around 6 this year. Although this low volume doesn't help ease my anxiety about being treated at a facility that doesn't see a lot of this, the physician did assure me that he felt very confident that they were capable of caring for Mathias. He also has treated patients that have had the enzyme deficiency that Mathias has. I have decided that since I don't have a choice, I'm going to just try and be positive and make the best of the situation.

One other thing that stinks about this is that I have been getting an employee discount for Mathias' hospitalizations to date. Unfortunately since we are having to change to the other hospital, I will no longer be eligable for the employee discount. I swear, when it rains, it pours.

Tuesday - May 27th

Mathias was discharged from the hospital Sunday and we were able to have Monday at home before having to go back today for his next chemo treatment. They had some difficulty with his lumbar puncture and Mathias had a rough day. He took four hours to wake up and we didn't get home until 4:30, so it was a long day. He is happy now and is playing with his toys. It is now a little after 6:00 and I am so ready for bed right now since I couldn't sleep last night. Hopefully Mathias will want to go to bed early tonight since I work tomorrow. I haven't been to work in over a week, so I am really looking forward to a day out of the house.

Saturday - May 24

Mathias seems to feel better today, but he's still not wanting to eat or drink for me. He hasn't had a fever since last night, but I was just told that we will be staying in the hospital through the weekend. I'm a bit bummed by that, but we'll make the best of it. We'll see what happens on Monday...

Friday-May 23

Mathias is in the hospital. Wednesday night he got a fever and we rushed right in and they started IV antibiotics. His fever went has been going up and down since then. We thought we were going to go home today, but his temp went back up to 102 so they are running some additional tests to check for some possible viral causes (his blood cultures have all been negative so far). Mathias finally ate some McDonalds today after refusing to eat or drink for me for several days, so I was happy about that. Hopefully we will get to go home on Saturday, but we'll see....

May 19th - Monday

7:30 am....Mathias is still sleeping! Yeah! I think he's catching up from the lack of sleep over the last month. Today I have to stay home from work. Everyone that could watch Mathias is sick and we can't afford to expose him to anythig.... so I'll have to work from home. **If any of you out there reading this know of anyone who could help out with caring for Mathias temporarily until he is cleared to go back to his regular daycare, please let me know.** Anyway, tomorrow is Mathias' big day. He starts the next round of chemo. We'll keep our fingers crossed that he tolerates it well. Mathias still has his hair, but I decided this weekend that it is definitely thinning....I wonder if this week is the week it goes??

Friday- May 16th

Great news today! Mathias' bone marrow test from this past Tuesday was again clear and confirms his remission status. We now move ahead with the next phase of treatment. This next Tuesday (May 20th) will be the first day of the next round and it will be a big one. Mathis will receive four different chemotherapy drugs. One in his port, one in his spine, one shot, and one orally. One of these drugs is one that he has not received before and I am concerned how he will tolerate it since a test has revealed that Mathias has a very low level of the enzyme needed to help his body process the drug. For this reason, Mathias will receive a much lower than normal dose. The trick the doctor will have will be to find a dose to be enough for Mathias to obtain a level of the drug to be theraputic, and without giving him too much that would be toxic for his body.

Mathias information to date

April 11th- Mathias was diagnosed with Acute Lymphocytic Leukemia (ALL).

April 18th-Mathias was discharged after spening 8 days in the hospital. He began receiving chemo treatments immediately. He has received chemotherapy intrathecally (in his spine), through his port, and by injection.

April 22nd-Mathias has a 7 day bone marrow aspiration to see if the chemotherapy is working. He still showed 8% leukemic cells (they want less than 5% to be considered remission), but it was still good news because the number had decreased. So far all Lumbar punctures have been negative for leukemic cells.

April 29th-Mathias has a 14 day bone marrow aspiration, which did not show any leukemic cells in the sample. This was great news and he was then considered in remission. This puts him in the 'early response' to treatment group, as long as his marrow stays clear on the May 13th check. The earlier a patient responds to treatment, the higher the likelihood of successful outcome/prognosis.

May 6th-Mathias has a chemo treatment of Vincrystine and labs drawn. He has one more week of Decadron left (steroid). I cannot wait for him to finish this drug because he has gained so much weight and become so bloated. He went from 27 pounds to 34 pounds in a matter of weeks...for a two year old, that is a LOT! The drug has caused mood swings, trouble sleeping, and a constant hunger. He is often up from 1 or 2am until 4 or 5am...which makes for a long day of work the next day.

May 13th-Mathias had a lumbar puncture today with a chemo treatment intrathecally, along with another bone marrow aspiration. I am hoping to get the results sometime torrow. Yesterday was the last day of the Decadron and I am curious to see when he stops eating everything in site. He still has not lost his hair...

May 14th-Mathias slept through the entire night for the first time in about a month! Most surprising was that he didn't ask for something to eat the moment he woke up. The Decadron is supposed to take about a week for the side effects to fade...luckily for me I have seen improvent in only one day. Mathias had a low fever today (100.5) and I was worried about him. I was told if it got to 101 that he would need to go to the ER for IV antibiotics, but so far it has stayed around 100, so hopefully it will go back down. No news yet on test results from yesterday's bone marrow aspiration. Hopefully they will call me tomorrow and give me some good news.