So, to spare you the worry, I will tell you now that Matt is okay. :) He is actually feeling quite a bit more like himself and even went to a half day of school today (I think I need to modify his schedule so he only goes 1/2 days everyday, but that's another post.....)
On Thursday he went in for his MRI. It was a bit of a fiasco. They accessed his port and it seemed just fine. I was waiting and waiting and waiting and was beginning to get worried about it taking so long when the tech came out to get me - without Matthew, never a good sign.
Apparently, the tech had injected the contrast through his port, all 16 cc's of it, and then gone back to complete the scan. However, there was no contrast in his system....... Somehow, the port had come dislodged and there was only about 1/8" of needle inside Matt. Instead of the contrast going into the Port and through his system, it had all been injected directly into the muscle right underneath the skin. Everyone was absolutely shocked that Matt hadn't felt pain when this had happened. Usually if something misses the Port, it is very painful immediately. Besides the fact that Matt is the toughest kid I know and has an insanely high pain tolerance, he was also on massive amounts of narcotics to combat the severe headache he had. Soooooo, they had to have an oncology nurse come down to re-access his port so he could finish the MRI and also so they could flush it with Heparin (otherwise it would clot and be unusable). Our 3:00, 1 hour long MRI didn't get finished until almost 7:00.
I left PCMC a big bundle of nerves. I was terrified about what we would hear. I waited anxiously on Friday. In fact, I waited and waited and waited - all day long. My mind was going a million miles per minute. It was probably good news, so that's why they weren't calling. It just wasn't a big deal. Or WAIT, it was probably TERRIBLE news and they were all drawing straws about who would have to tell us our child was dying, or needed a shunt, or needed another surgery, or had developed a secondary cancer, or, or, or, or..... You get the idea. I spoke with St.Jude 3 times on Friday. They hadn't heard anything, either. In fact, they had called twice and left messages, but had never received a call back.
Finally, towards the end of the day, we heard the GREAT news that Matt's scans looked great. Our friend was able to look at the scans and read us the report. He called the scans 'miraculous' in the change caused by the chemo, but also noted that Matt had a tremendous sinus infection. He said he had rarely seen sinuses so terrible.
So, I got off the phone with him, called St.Jude to get the list of medications that Matt could be on for this infection, called my pediatrician and explained what we needed, and he called in a prescription for the antibiotics. Matt has now been on the medication for 4 days and he is feeling much much better.
I've spoken with St.Jude several more times. They are really worried about Matt.
He's been on needed treatment for 4 days.
I STILL haven't heard how Matt's MRI looked from PCMC...... And they are the ones who ordered the MRI!
Does anyone else think that is NOT OKAY???
Monday, February 28, 2011
Wednesday, February 23, 2011
Scary Stuff
Over the past 2 years, while Matt has been stable, I think I've sort of forgotten (blocked???) the roller coaster otherwise called 'I have a child with cancer'. The highs are higher than you can imagine (Stable! Shrinkage! Miracles!!) but the lows are oh so low. It is a weird feeling, this euphoria mixed with utter despair, and it can change in a day, an hour, an instant.
Thus, my happy go lucky post of a few days ago is now completely different. I mentioned his feet in my last post and that was the beginning of a quick ride downhill. He had the u/s and such to rule out clots, but then he began feeling poorly. We can't quite put a finger on what is going on. Every test that is run is negative, but he has been extremely lethargic, has no appetite, has a severe headache, stuffy nose, congestion, and just generally feels crummy. When I say he has been lethargic, he's been really tired. He slept much of the day on Saturday and over 8 hours on Monday. :(
So, after having a crummy day Saturday and when he woke up Sunday still feeling really bad, we decided to take him into PCMC and have him seen. In triage, he freaked everyone out. His breathing was labored and fast, his color was bad, and just hearing Matt's history makes every doctor worth their stethoscope panic. They ran labs (all fine) and gave him fluids. By the time we had been there for 4ish hours, Matt was looking a bit better. They were going to admit him to the hospital 'for observation', but I talked them out of it. :) I would do anything if Matt needed it, but with all the tests coming back negative, and a holiday weekend that assured me nothing would really get done before Tuesday, it seemed that Matt would sleep better in his own bed. I promised to watch him carefully, bring him back if I was worried again, and follow up this week.
Then he slept ALL DAY on Monday.
I hoped that he would perk up a bit once he woke up, but on Tuesday he was feeling even worse. I quickly got ready, called both PCMC and St.Jude, dropped off my little ones with my sister-in-law and headed to PCMC. Once there, Matt again succeeded in freaking everyone out. I wheeled him into oncology in tears because he was in so much pain. When the NP and nurses came in he was lying on the bed in the fetal position looking about as miserable as I've ever seen him.
Then, he started to perk up a little bit. Of course, the doctor came in after a little while and Matt was looking much much much better. I was actually happy the nurses and NP had seen him so miserable - otherwise I would feel like I was crazy!
Anyhow, long story short (even though this isn't short. Ha!) they ran many many tests, gave him fluids, IV narcotics for the pain and we came home. We go back tomorrow for an MRI to make sure this headache isn't tumor related.
And this pretty much sums up why having a kid with cancer is so difficult. You have to learn to think backwards. If any of my other kids are having pain in their leg, I'll help them soak it in a bath, take Tylenol, rest it, etc.... If Matt has pain in his leg, we rush into the ER for u/s and specialized tests to rule out clots or something else, then, if everything looks okay, I help him soak it in a bath and give him Tylenol. :)
If my other kids get a virus, I'll put them to bed without a second thought. I make sure they have a puke bucket, that their fever doesn't get too high, and that they are comfortable and feel loved. If Matt gets a virus, we spend the next 3 days in the ER, increase some of his medications, run every test under the sun, and do an emergency MRI to rule out something in the brain causing the symptoms.
I'm trying to have faith that this is just a virus that is kicking his butt.
But I'm terrified that it's not!
So, if you are so inclined, we would very much appreciate some prayers on his behalf. Prayers that this is just a virus, that his scans will still look good tomorrow, and, mostly, that he can begin feeling better!
Thus, my happy go lucky post of a few days ago is now completely different. I mentioned his feet in my last post and that was the beginning of a quick ride downhill. He had the u/s and such to rule out clots, but then he began feeling poorly. We can't quite put a finger on what is going on. Every test that is run is negative, but he has been extremely lethargic, has no appetite, has a severe headache, stuffy nose, congestion, and just generally feels crummy. When I say he has been lethargic, he's been really tired. He slept much of the day on Saturday and over 8 hours on Monday. :(
So, after having a crummy day Saturday and when he woke up Sunday still feeling really bad, we decided to take him into PCMC and have him seen. In triage, he freaked everyone out. His breathing was labored and fast, his color was bad, and just hearing Matt's history makes every doctor worth their stethoscope panic. They ran labs (all fine) and gave him fluids. By the time we had been there for 4ish hours, Matt was looking a bit better. They were going to admit him to the hospital 'for observation', but I talked them out of it. :) I would do anything if Matt needed it, but with all the tests coming back negative, and a holiday weekend that assured me nothing would really get done before Tuesday, it seemed that Matt would sleep better in his own bed. I promised to watch him carefully, bring him back if I was worried again, and follow up this week.
Then he slept ALL DAY on Monday.
I hoped that he would perk up a bit once he woke up, but on Tuesday he was feeling even worse. I quickly got ready, called both PCMC and St.Jude, dropped off my little ones with my sister-in-law and headed to PCMC. Once there, Matt again succeeded in freaking everyone out. I wheeled him into oncology in tears because he was in so much pain. When the NP and nurses came in he was lying on the bed in the fetal position looking about as miserable as I've ever seen him.
Then, he started to perk up a little bit. Of course, the doctor came in after a little while and Matt was looking much much much better. I was actually happy the nurses and NP had seen him so miserable - otherwise I would feel like I was crazy!
Anyhow, long story short (even though this isn't short. Ha!) they ran many many tests, gave him fluids, IV narcotics for the pain and we came home. We go back tomorrow for an MRI to make sure this headache isn't tumor related.
And this pretty much sums up why having a kid with cancer is so difficult. You have to learn to think backwards. If any of my other kids are having pain in their leg, I'll help them soak it in a bath, take Tylenol, rest it, etc.... If Matt has pain in his leg, we rush into the ER for u/s and specialized tests to rule out clots or something else, then, if everything looks okay, I help him soak it in a bath and give him Tylenol. :)
If my other kids get a virus, I'll put them to bed without a second thought. I make sure they have a puke bucket, that their fever doesn't get too high, and that they are comfortable and feel loved. If Matt gets a virus, we spend the next 3 days in the ER, increase some of his medications, run every test under the sun, and do an emergency MRI to rule out something in the brain causing the symptoms.
I'm trying to have faith that this is just a virus that is kicking his butt.
But I'm terrified that it's not!
So, if you are so inclined, we would very much appreciate some prayers on his behalf. Prayers that this is just a virus, that his scans will still look good tomorrow, and, mostly, that he can begin feeling better!
Thursday, February 17, 2011
Good News
Sorry for the delay in update. I'm just busy.... and slow.
We returned to Memphis 2 weeks ago. I have never ever been so anxious for appointments. I just assumed that Matt would have his MRI's the day after we arrived. However, they did ALL the other tests FIRST! We arrived on Monday and didn't have MRI's until Thursday and didn't get results until FRIDAY!!! Talk about mounting anxiety!
I couldn't sleep. Couldn't eat. Couldn't think.
Thankfully, on Friday, our first appointment was with Dr.Wetmore. She came in and the first words out of her mouth were, 'his scans look good'. :) She must have realized how anxious we were. The chemo seems to be working. All of the metastasized tumor is 'stable', which is good. The main body of the tumor is actually a teeny bit smaller, which is a miracle! In his previous chemo, the drop mets shrank and even eventually went away, but the main tumor has been untouchable and has only gotten smaller when it has been altered surgically. To give you a sense of size, his tumor is roughly 5 cm. (2") by 3cm. (1 1/4"). His tumor showed shrinkage of 1/2 cm. all the way around. 1/2 cm. doesn't sound like much, but it is HUGE when you take into account the total tumor size.
We had another blessing, too. As one of the things they look for on this protocal, they do knee X-rays to rule out Avascular Necrosis (damage to the joint tissue). In Matt's X-ray, there was evidence of this disease. Ultimately, a knee or hip replacement is a small price to pay for a cancer treatment that is working, but I still felt worried about my 200 lb. 12 year old having joint problems. Since the X-ray came back positive, we had to schedule an MRI of both knees. In this MRI, there was NO EVIDENCE of disease. Woo-Hoooooo! They will continue to monitor him closely, but as of right now, Avascular Necrosis isn't a problem.
Since coming home, Matt attended school all last week. He never made it to first period but we do our best. :) He is quite fatigued and nausea and vomiting have made their appearances, but he is doing pretty well.
This week he has felt fine except his feet have been really sore. This is a mystery to everyone! Yesterday we went in and had him checked out. He has a petechial rash all over the top of his foot and his toes are really discolored. They did an u/s of his entire leg to rule out clots (none, thank goodness!) and they also checked his blood flow to make sure there wasn't a circulatory issue. That rules out the two most urgent problems that could be causing his symptoms of foot pain and discoloration. We're still trying to get to the bottom of that. Unfortunately, the pain has been severe enough that he has not been able to attend school since Tuesday. :( As long as he is taking it easy, though, he isn't in pain and otherwise feels well.
So, there you have it. Consider yourself updated. :)
We returned to Memphis 2 weeks ago. I have never ever been so anxious for appointments. I just assumed that Matt would have his MRI's the day after we arrived. However, they did ALL the other tests FIRST! We arrived on Monday and didn't have MRI's until Thursday and didn't get results until FRIDAY!!! Talk about mounting anxiety!
I couldn't sleep. Couldn't eat. Couldn't think.
Thankfully, on Friday, our first appointment was with Dr.Wetmore. She came in and the first words out of her mouth were, 'his scans look good'. :) She must have realized how anxious we were. The chemo seems to be working. All of the metastasized tumor is 'stable', which is good. The main body of the tumor is actually a teeny bit smaller, which is a miracle! In his previous chemo, the drop mets shrank and even eventually went away, but the main tumor has been untouchable and has only gotten smaller when it has been altered surgically. To give you a sense of size, his tumor is roughly 5 cm. (2") by 3cm. (1 1/4"). His tumor showed shrinkage of 1/2 cm. all the way around. 1/2 cm. doesn't sound like much, but it is HUGE when you take into account the total tumor size.
We had another blessing, too. As one of the things they look for on this protocal, they do knee X-rays to rule out Avascular Necrosis (damage to the joint tissue). In Matt's X-ray, there was evidence of this disease. Ultimately, a knee or hip replacement is a small price to pay for a cancer treatment that is working, but I still felt worried about my 200 lb. 12 year old having joint problems. Since the X-ray came back positive, we had to schedule an MRI of both knees. In this MRI, there was NO EVIDENCE of disease. Woo-Hoooooo! They will continue to monitor him closely, but as of right now, Avascular Necrosis isn't a problem.
Since coming home, Matt attended school all last week. He never made it to first period but we do our best. :) He is quite fatigued and nausea and vomiting have made their appearances, but he is doing pretty well.
This week he has felt fine except his feet have been really sore. This is a mystery to everyone! Yesterday we went in and had him checked out. He has a petechial rash all over the top of his foot and his toes are really discolored. They did an u/s of his entire leg to rule out clots (none, thank goodness!) and they also checked his blood flow to make sure there wasn't a circulatory issue. That rules out the two most urgent problems that could be causing his symptoms of foot pain and discoloration. We're still trying to get to the bottom of that. Unfortunately, the pain has been severe enough that he has not been able to attend school since Tuesday. :( As long as he is taking it easy, though, he isn't in pain and otherwise feels well.
So, there you have it. Consider yourself updated. :)
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