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
Thursday, July 31, 2008
Sunday, July 27, 2008
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
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 22, 2008
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 19, 2008
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....
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 6, 2008
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.
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.
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