I was thinking this morning that I haven't done this blog justice for its original purpose...that is discussing American Saints and how to teach American Catholic History. Instead, I've been using as an update tool for John's brain tumor condition.
But as I reflected on John's next update post, I realized that I may have become single-subject with this blog, but it isn't far off its intended purpose. You see, everytime I do a book signing, I try to personalize the signature for the young girl, boy or family members that will read the saints' story and learn from it. My goal in writing the stories was that the children relate to the girls and boys in the story and how they struggle to learn from saints in their own lives so that they grow and learn to become saints, also. So I frequently sign the books: To_____, May you, too, become a great American Saint!
I realized this morning that making us American Saints was exactly what God has been trying to do with us. Although we have a long way to go, with God's grace, we may just be able to stand with other great American Saints, who, through the grace of God, have reached their heavenly reward.
You see, John is doing much better, thanks to his new treatment and the grace of God. And, as I reflect on the last few years since his original diagnosis, I do wonder at times how we've been able to come this far. Your prayers and God's grace is the only answer that comes to mind. My oldest daughter, Beth, who is consecrated and not at home, would often ask us to write her and tell her how we were handling everything physically and spiritually. That was much more difficult than it sounds. While you are in a critical, long-term medical condition, you simply do what you have to do. You pray daily, you accept God's will one day at a time, and trust. Trust that God knows what He's doing and that you do what He wants. Trust that somehow there will be a light at the end of the endless doctor's appointments, waiting rooms, trying to squeeze time to feed the family, do laundry, get out orders, and change a diaper. Somehow, what absolutely needs to get done, does get done and the world doesn't collapse. God is always there.
So, here's the update on John: he's been receiving the infusion of Avastin for about three months now. The last MRI taken at the end of June shows "moderate" improvement. But I didn't need a test to know that the Avastin was working. John can read again! John talks again! John isn't bloated anymore! John rides his bike and plays basketball and swims! His personality is back in full swing, which means he talks and talks and talks and talks!
And the best news is that Make a Wish is sending us to Legoland! The whole family, with the exception of Beth, will be flying to San Diego later this month to spend a week seeing the wonderful sights of Southern California! Make a Wish is a fantastic organization and I can't thank them enough for their kindness toward John and the whole family. We are very, very blessed.
So, although we have know idea how the whole John-and-his-brain-tumor story may turn out in the end, we thank you for your prayers and know that in the end, what really matters is that we know that our true calling is to be Great American Saints. May you, too, become a great American Saint! God bless, Joan
Sunday, July 5, 2009
Friday, May 29, 2009
New Treatment, New John
Sorry it has been so long since the last update. There were weeks when we were going to two or three doctors appointments a week. So our already hectic life was taken up a notch and I was spent half my time hurrying to get everything done so that I could sit and wait and wait and wait at any number of doctors' offices. At present, we are sitting at the Kosair's Children's Hospital waiting for the new medication that John is on to be infused. But I'm getting ahead of the story here.
Right after the last post, John was officially diagnosed with "radiation necrosis." Although I wasn't given the same definition of this from different doctors, what I understand is that the tumor and the tissue that surrounds it, has died and swelled up. Blood has rushed to the area and the steroids were no longer controlling the swelling. John's body was showing the signs of long-term cortico-steroid use. Angry-looking red stretch marks were no only apparent under his arms and upper thighs, but even on his belly and shins. The hematologist wanted to try another medication that is used in combination with chemo drugs. This drug, Avastin, is a blood inhibitor. Because tumors attract blood to grow so rapidly, they actually form new blood vessels to feed the tumor. Avastin inhibits the blood flow to the tumors. The thought was that it would also inhibit the blood flow to the dead tumor, thus reducing the swelling inside the brain. The medication has been approved to treat tumors, but was only approved to treat radiation necrosis in adults in early May. Despite that, our insurance did approve the Avastin for use in treating John's radiation necrosis.
We go to the hospital every other week for a whole day to have the medication infused intravenously. From the very first treatment, we could see the difference. After the second treatment, his double vision nearly completely disappeared. His personality started to become more outgoing, also. The week before the third treatment, we were able to stop the steroids altogether. John's face is beginning to look less bloated and his eyes actually track together so his sight has improved.
Of course, with everything we've experienced, there are side effects. So far, the side-effects of the Avastin seems much more manageable than the side-effects of the steroids. Certainly, the benefits seem to be outweighing anything we've experienced. He's had a few headaches and some down time, but nothing compared to what it was before.
This Sunday, Pentecost, John is receiving the sacrament of Confirmation. His Confirmation name is John Bosco. We are all looking forward to the celebration with him. He's been through a lot and this celebration is most welcomed! Again, thanks for your prayers! God bless, Joan
Right after the last post, John was officially diagnosed with "radiation necrosis." Although I wasn't given the same definition of this from different doctors, what I understand is that the tumor and the tissue that surrounds it, has died and swelled up. Blood has rushed to the area and the steroids were no longer controlling the swelling. John's body was showing the signs of long-term cortico-steroid use. Angry-looking red stretch marks were no only apparent under his arms and upper thighs, but even on his belly and shins. The hematologist wanted to try another medication that is used in combination with chemo drugs. This drug, Avastin, is a blood inhibitor. Because tumors attract blood to grow so rapidly, they actually form new blood vessels to feed the tumor. Avastin inhibits the blood flow to the tumors. The thought was that it would also inhibit the blood flow to the dead tumor, thus reducing the swelling inside the brain. The medication has been approved to treat tumors, but was only approved to treat radiation necrosis in adults in early May. Despite that, our insurance did approve the Avastin for use in treating John's radiation necrosis.
We go to the hospital every other week for a whole day to have the medication infused intravenously. From the very first treatment, we could see the difference. After the second treatment, his double vision nearly completely disappeared. His personality started to become more outgoing, also. The week before the third treatment, we were able to stop the steroids altogether. John's face is beginning to look less bloated and his eyes actually track together so his sight has improved.
Of course, with everything we've experienced, there are side effects. So far, the side-effects of the Avastin seems much more manageable than the side-effects of the steroids. Certainly, the benefits seem to be outweighing anything we've experienced. He's had a few headaches and some down time, but nothing compared to what it was before.
This Sunday, Pentecost, John is receiving the sacrament of Confirmation. His Confirmation name is John Bosco. We are all looking forward to the celebration with him. He's been through a lot and this celebration is most welcomed! Again, thanks for your prayers! God bless, Joan
Friday, April 17, 2009
What the *Team* says...
John had his MRI on April 2nd and since then we've met with his general practitioner and three more doctors: his radiologist, the chemotologist and one, to tell you the truth, I don't know why he was there! Perhaps he was just curious! (or he wanted our copay?) He's also had some bloodwork drawn right before Easter. The short version of the results is that they weren't very encouraging.
The MRI showed very little, if any change from the January MRI...the brain tumor hasn't grown (good news) and they say it looks "dead." The bad news is that the swelling hasn't gone down any. They were hoping it would have gone down by now so that he could be weaned off the steroids. The steroids are causing problems with cholesterol. He's been on a strict diet and exercising everyday, but in six weeks, the cholesterol level went from 330 to only about 323. The weight has stayed the same, or he's lost a pound or two. But he figures as much as he is watching his weight and exercising, he should be losing weight, not keeping it the same. The doctors tell us that he'll loose it after he's off the steroids. The steroids are also wreaking havoc with other hormones, so they are concerned about his endocrine system, also.
So the first thing the doctors want to do is find another alternative to the steroids to help with the brain swelling. The hematologist suggested a chemo drug they use called Cellebrex. She wanted to do a little more research to see if that might work. We have another appointment with her next week. The other option is hyperbolic chamber oxygen treatment. This would be an hour or two a day, five days a week for six weeks. They are reluctant to do that because the oxygen saturation that would heal the brain faster and reduce the swelling would also stimulate any cancer cells that may not have died in the radiation treatment. I think we'll hold off on that for now.
So, the doctors suggested that we see more doctors! We now have an appointment for the endocrinologist and a pediatric eye specialist (for the double vision.) Our old pediatric eye specialist moved to Cleveland in January. Too bad, too. We also have an appointment for a PET scan. I'm not sure what that is...I'm really not good at medical stuff...but I think it measures the cancer cells in the body. This will help if we have to go the hyperbolic oxygen chamber route.
John is taking this pretty much in stride. I think he is very slowly getting better. The doctors still don't think this is a permanent condition and that he'll eventually get over it. Right now they are trying to improve on his quality of life because he isn't extremely functional. He has a hard time seeing, focusing and things like riding a bike, playing sports, or reading and writing are very difficult. I see improvement in his general disposition. He seems more like himself with the coming of spring. I feel like he's had a very rough winter.
We also got the good news that he's been granted a wish from the Make a Wish Foundation. We are waiting for them to call to set up an appointment. John has mentioned that he'd like to go to Legoland in San Diego. Perhaps we'll fly out there and motor home back so we can see Grand Canyon, Hoover Dam and more. It is definitely something to look forward to.
Well, I think that is all on the update for John. Thank you all for your prayers. Know that you all are in mine! God bless, Joan
The MRI showed very little, if any change from the January MRI...the brain tumor hasn't grown (good news) and they say it looks "dead." The bad news is that the swelling hasn't gone down any. They were hoping it would have gone down by now so that he could be weaned off the steroids. The steroids are causing problems with cholesterol. He's been on a strict diet and exercising everyday, but in six weeks, the cholesterol level went from 330 to only about 323. The weight has stayed the same, or he's lost a pound or two. But he figures as much as he is watching his weight and exercising, he should be losing weight, not keeping it the same. The doctors tell us that he'll loose it after he's off the steroids. The steroids are also wreaking havoc with other hormones, so they are concerned about his endocrine system, also.
So the first thing the doctors want to do is find another alternative to the steroids to help with the brain swelling. The hematologist suggested a chemo drug they use called Cellebrex. She wanted to do a little more research to see if that might work. We have another appointment with her next week. The other option is hyperbolic chamber oxygen treatment. This would be an hour or two a day, five days a week for six weeks. They are reluctant to do that because the oxygen saturation that would heal the brain faster and reduce the swelling would also stimulate any cancer cells that may not have died in the radiation treatment. I think we'll hold off on that for now.
So, the doctors suggested that we see more doctors! We now have an appointment for the endocrinologist and a pediatric eye specialist (for the double vision.) Our old pediatric eye specialist moved to Cleveland in January. Too bad, too. We also have an appointment for a PET scan. I'm not sure what that is...I'm really not good at medical stuff...but I think it measures the cancer cells in the body. This will help if we have to go the hyperbolic oxygen chamber route.
John is taking this pretty much in stride. I think he is very slowly getting better. The doctors still don't think this is a permanent condition and that he'll eventually get over it. Right now they are trying to improve on his quality of life because he isn't extremely functional. He has a hard time seeing, focusing and things like riding a bike, playing sports, or reading and writing are very difficult. I see improvement in his general disposition. He seems more like himself with the coming of spring. I feel like he's had a very rough winter.
We also got the good news that he's been granted a wish from the Make a Wish Foundation. We are waiting for them to call to set up an appointment. John has mentioned that he'd like to go to Legoland in San Diego. Perhaps we'll fly out there and motor home back so we can see Grand Canyon, Hoover Dam and more. It is definitely something to look forward to.
Well, I think that is all on the update for John. Thank you all for your prayers. Know that you all are in mine! God bless, Joan
Friday, March 27, 2009
Bottoming out?
My girls and I had a great time in New England last week. We got to visit Louisa May Alcott's house in Concord, MA, which was a great field trip! I was impressed that her house had been a museum since 1911. Because of that, most of the items in the house actually belonged to the Alcotts including the pen and ink well Louisa used for writing her famous books. Her sister, May (Amy in the book, Little Women), was as artist and her original works grace the walls and doors of her room. Other of her artworks are on scattered throughout the house. It was a real treat.
When we returned home, I was hoping to find John greatly improved, but he wasn't. He has been having such bad double vision and trouble opening his eyes, he really can't read much anymore. Physically, he has lost about 8 pounds and his face is clearing up. It doesn't look so puffy to me, either. I was glad about that, since that means the effects of the cortico steroid were diminishing. But instead, he was having the terrible double vision. I called the radiologist, who wanted to increase the cortico-steroid. He said it sounded like the medication had "bottomed out." He also wanted to have John do a repeat MRI and come in to meet three doctors: the radiology oncologist, the chomotologist and the neurosurgeon, all at the same time. So John has a repeat MRI on April 2nd and meets with the trio of doctors on April 14th.
The extra pill really did help. He can open his eyes and focus much better. I said, "Great, now you can do an Algebra lesson!" He then tried to roll his eyes, but they weren't THAT much better! He is in a nice place now where the steroid effects are diminishing and he can open his eyes. I told him I thought he was getting better and he began arguing with me. I said, "See, right there, you're being beligerent so I know you're getting better!" A little peek of the old John.
I was able to see both my parents and my in-laws on the way back from New England. Both seemed to be doing well. It was great to see them.
Thanks again for your prayers! Know that you all are in ours.
When we returned home, I was hoping to find John greatly improved, but he wasn't. He has been having such bad double vision and trouble opening his eyes, he really can't read much anymore. Physically, he has lost about 8 pounds and his face is clearing up. It doesn't look so puffy to me, either. I was glad about that, since that means the effects of the cortico steroid were diminishing. But instead, he was having the terrible double vision. I called the radiologist, who wanted to increase the cortico-steroid. He said it sounded like the medication had "bottomed out." He also wanted to have John do a repeat MRI and come in to meet three doctors: the radiology oncologist, the chomotologist and the neurosurgeon, all at the same time. So John has a repeat MRI on April 2nd and meets with the trio of doctors on April 14th.
The extra pill really did help. He can open his eyes and focus much better. I said, "Great, now you can do an Algebra lesson!" He then tried to roll his eyes, but they weren't THAT much better! He is in a nice place now where the steroid effects are diminishing and he can open his eyes. I told him I thought he was getting better and he began arguing with me. I said, "See, right there, you're being beligerent so I know you're getting better!" A little peek of the old John.
I was able to see both my parents and my in-laws on the way back from New England. Both seemed to be doing well. It was great to see them.
Thanks again for your prayers! Know that you all are in ours.
Tuesday, March 3, 2009
Another Round of Doctors...
John went for another round of doctor's appointments last week. We went to the family doctor, then to the lab to get some blood drawn, then to the neurosurgeon. The radiology doctor wanted the other doctors to see John and make sure that they all were doing what they could for him. The family doctor ordered the bloodwork. We got the results today. The good news is that John doesn't have diabetes that is sometimes associated with cortico-steroid medication. The bad news is that the "other sugar" test the doctor did (hemo Ac1?) was very close to being alarming. He was a 5.98 and the alarms go off at 6.0. His cholesterol was also extremely high at 330. Since he is reducing the steroids slowly, the doctor thinks that we can help the high levels by diet and exercise. This is really difficult since the steroids make John's hunger greater and his muscles weaker. I feel like such a mean mom telling him, "No, you can't eat that," all the time. He tries to exercise everyday for a little while. The steroids also cause shortness of breath, so after 15 minutes walking quickly on the treadmill, he is pretty exhausted. He says that exercising helps his double-vision, if only temporarily. We did try to decrease the steroids over the weekend, but the double-vision was just too bad, so we had to go back to two 1 mg tablets a day. One of the doctors said that it might take up to six months for the swelling to go down. I can't imagine him being on the steroids for three more months. I pray that the swelling goes down before then.
John has also withdrawn into himself quite a bit. He's so quiet, I hardly know when he's around. Before this, he was so talkative, we would have to ask him to be quiet just to let our ears get a rest! The family doctor seems to think that this will return to normal after he is weaned off the steroids, also.
Life continues on other fronts, too. Maggie turns 12 on Thursday (Happy Birthday, Maggie!) and Maggie, Tommy and I are planning on visiting Mary and Elizabeth in Rhode Island next week. Joe is taking off next week to visit with his buddies in Steubenville and Mick is on spring break the week I'm in Rhode Island, so he will take care of the kids while I'm away. I'm putting in a revolving door to save wear and tear on the front door!!
As always, thank you all for your prayers and cards and little gifts for John. I know he taps into the graces from your prayers to get through his days. Have a beautiful Feast of St. Katharine Drexel!
John has also withdrawn into himself quite a bit. He's so quiet, I hardly know when he's around. Before this, he was so talkative, we would have to ask him to be quiet just to let our ears get a rest! The family doctor seems to think that this will return to normal after he is weaned off the steroids, also.
Life continues on other fronts, too. Maggie turns 12 on Thursday (Happy Birthday, Maggie!) and Maggie, Tommy and I are planning on visiting Mary and Elizabeth in Rhode Island next week. Joe is taking off next week to visit with his buddies in Steubenville and Mick is on spring break the week I'm in Rhode Island, so he will take care of the kids while I'm away. I'm putting in a revolving door to save wear and tear on the front door!!
As always, thank you all for your prayers and cards and little gifts for John. I know he taps into the graces from your prayers to get through his days. Have a beautiful Feast of St. Katharine Drexel!
Wednesday, February 18, 2009
New American Saint!!
Fr. Damian, born Joseph de Veuster, was known as the "apostle to the lepers." He lived on the leper colony in Molokai, Hawaii in the 1800's. He knew when he went there, he would never be allowed to leave. His work to improve the lives of those forgotten ones banished by society earned him a martyr's death as a leper himself.
One of my favorite stories about soon-to-be St. Damian concerns the great American author Robert Louis Stevenson, a Presbyterian. St. Damian was not without controversy during his lifetime. Dr. Hyde, a Presbyterian minister, wrote a vicious attack on Fr. Damian during his life. The attack was published far and wide and many people believed it. Stevenson, on the other hand, was convinced of Fr. Damian's sanctity. He wrote a defense of Fr. Damian and was so horrified by the viciousness of Dr. Hyde's remarks that he named his the villian of his next story after him...The Strange Case of Dr. Jekyll and Mr. Hyde.
Here is a link to the Zenit news agency about the canonization. St. Damian, pray for us!
Wednesday, February 11, 2009
Well...more waiting
We went to see the radiation doctor today...finally. It had been three weeks since the follow-up MRI. The initial reading of the MRI seemed to indicate that the tumor had shrunk. What the radiation doctor today said was that the MRI showed the tumor tissue very swollen and the surrounding tissue was also swollen. He said, "In essence, the radiation worked too well, causing the tissue to swell up and die." So, the good news is that the radiation worked.
The bad news is the side effects. The only medication for the tissue swelling is steroids. John has gained 25 pounds, or increased his body weight by about 20%, since he Thanksgiving. He looks terrible. The doctor apologized for the rough time John is having from the steroids. He did give us a plan to start reducing them slowly so that he can eventually be weaned from them. God willing, he'll be weaned from them in the next month. Meanwhile, the doctor suggested we make appointments with the chemo doctor, the neurosurgeon and our family doctor. He wants John to have some bloodwork done because such extreme weight gain can put a strain on the organs including the pancreas.
John has been a model of charity throughout this. Knowing that the steroids make him irratable and causes insomnia, he still tries to help out as much as he can and do as much as he can. He feels a bit self-conscience about how he looks, but still makes sure he follows through on commitments like altar-serving, Confirmation retreat, etc. He is very grateful for all the cards and letters he's received. I believe these lift his spirit and help him get through another day.
From here, we try to reduce the steroids and look forward to a repeat MRI in April. Hopefully by then, a new spring will bring a new John that is free from growing tumor, and all the nasty side effects, too.
Thanks again for your prayers!
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