2/21
Jordy has had a lot of fun during the last couple of days. Yesterday, Terry, the man who donated the Blazer's tickets, brought his wife to visit Jordy. Kyle was also able to be here. They are so nice. It was great to talk to both of them. They are also trying to work it out for Kyle and Jordy to go to a Blazer's training camp so that they can meet some of the players. More excitement for the McDonald boys! We also heard stories about Willy, the limo driver. They told us that in eight years he has never had an accident, just on little "incident." They were in Las Vegas.
Willy hit a sign which flew through a crowd of people. Luckily no one was hurt and all was well.
There was another "card party" in the hallway last night. There were six kids this time. Another girl with a type of sarcoma joined the group. At times it appeared that there was more talking going on than card playing.
It was great to see them learning from each other and realizing that they have so much in common. The parents are also enjoying the chance to compare notes. It is not often that there are this many teens here at the same time. There are plans for another gathering tonight.
After the card game, the night nurses presented Jordy with a poster listing the Top 7 Things We Love About Jordon. It is so funny! Among them are his request for staff to address him as Sir Jordon and his belief that night nurses don't do much because all of the kids are sleeping!
Even Jordon has figured out that most of the excitement in a hospital happens at night, and very few kids (including Jordy) sleep at night. We all had tears in our eyes from laughing by the time they were done reading it to Jordy.
Jordy's Methatrexate level was .41 today. It has to be under .1 to go home. We will probably be home on Monday. Jordy is taking a week off from therapy, but on Wednesday he has an appointment with the prosthetist for some adjustments.
Enjoy your homes and families. We will be doing the same soon!!!
Annie
Sunday, February 22, 2009
Bummer...no last massage for Jordy ~
2/20
Yesterday was a bit of a disappointment to Jordy. The massage lady was sick, so he did not get his last Thursday morning massage.
Last night Jordy did have a very fun time. It was the oddest event, but very touching. A group of five teen "Osteos" (kids being treated for
Osteosarcoma) got together in the hall and played cards. First, it is strange for there to be that many kids with the same diagnosis and ages to be here all at once. Second, it is unusual for them to all be feeling relatively well at the same time.
The group consisted of Jordy and Steven (oldies) and three new kids. It was great to hear them talking and LAUGHING!!! It was wonderful to see kids that have been so stressed be able to just have fun. Even the nurses were excited to see the kids having fun.
The parents also sat together and talked. The questions from the new parents brought back so many memories for Steven's dad and myself. The biggest concerns were facing surgery and getting the kids to eat. The locations of tumors were diverse, including the tibia, fibula, spine, ankle, and shoulder, but they all are being treated for osteosarcoma.
While it is so scary, last night they all had a great time.
At 11:00 the party broke up. One girl was not feeling well and the rest were tired. Jordy said that he wondered if they really just needed to use the bathroom. They were all on high levels of fluids. I think he was probably right that their bladders just couldn't take it any more.
Jordy is still sleeping, but will soon be awake for today's activities and visitors. This will be his last time for Friday rounds. On Fridays a larger group comes for rounds. All of the doctors, the dietitian, the nurse practitioner, etc. are included.
Enjoy the sunshine!
Annie
Yesterday was a bit of a disappointment to Jordy. The massage lady was sick, so he did not get his last Thursday morning massage.
Last night Jordy did have a very fun time. It was the oddest event, but very touching. A group of five teen "Osteos" (kids being treated for
Osteosarcoma) got together in the hall and played cards. First, it is strange for there to be that many kids with the same diagnosis and ages to be here all at once. Second, it is unusual for them to all be feeling relatively well at the same time.
The group consisted of Jordy and Steven (oldies) and three new kids. It was great to hear them talking and LAUGHING!!! It was wonderful to see kids that have been so stressed be able to just have fun. Even the nurses were excited to see the kids having fun.
The parents also sat together and talked. The questions from the new parents brought back so many memories for Steven's dad and myself. The biggest concerns were facing surgery and getting the kids to eat. The locations of tumors were diverse, including the tibia, fibula, spine, ankle, and shoulder, but they all are being treated for osteosarcoma.
While it is so scary, last night they all had a great time.
At 11:00 the party broke up. One girl was not feeling well and the rest were tired. Jordy said that he wondered if they really just needed to use the bathroom. They were all on high levels of fluids. I think he was probably right that their bladders just couldn't take it any more.
Jordy is still sleeping, but will soon be awake for today's activities and visitors. This will be his last time for Friday rounds. On Fridays a larger group comes for rounds. All of the doctors, the dietitian, the nurse practitioner, etc. are included.
Enjoy the sunshine!
Annie
Friday, February 20, 2009
Congratulations Jordy & Family!!!!
February 19 ~
It is done, over, finshed!!!!
Jordy is doing well . . . just a little queasy. It has been great having staff, other parents, and patients stopping by to congratulate Jordy regarding the end of his chemo. Although it is VERY exciting, there is also a sense of loss that comes along with leaving our home away from home for the past eight months. That said, we are so excited to be finished.
We have much more exciting things to be doing!
Jordy also heard from the Children's Cancer Association. As part of their "Life Support" program they grant wishes, similar to Make-a-wish. Jordy's wish is to fix up his Mitsubishi. He loves that car because it is the first car that he bought, and he worked hard on a farm to earn the money Bev told us that a body shop will be painting the car. She will give us more details as they come. One of Jordy's goals in life has been to have a vehicle that is not "cosmetically challenged." Now there is hope.
Tomorrow Terry, the man who donated the Blazer's tickets, is coming to visit Jordy and see "the shoes." He may also bring someone from Nike.
Susan, the Child Life Specialist, also had some good news for Jordy. With at donation, she purchased a WII Fit for the unit. She is going to let Jordy try it out first. Tomorrow when he is feeling a little better, he will put on his prosthesis and give it a try.
Bryan, the social worker, came by for a visit. He asked Jordy if he would want to talk to a 16 year old girl with Osteosarcoma that is just starting treatment. He is very willing to share his experience and reassure her.
Jordy's kidney levels continue to slowly, but steadily improve. We are hoping they kick the Methatrexate out quick.
Annie
It is done, over, finshed!!!!
Jordy is doing well . . . just a little queasy. It has been great having staff, other parents, and patients stopping by to congratulate Jordy regarding the end of his chemo. Although it is VERY exciting, there is also a sense of loss that comes along with leaving our home away from home for the past eight months. That said, we are so excited to be finished.
We have much more exciting things to be doing!
Jordy also heard from the Children's Cancer Association. As part of their "Life Support" program they grant wishes, similar to Make-a-wish. Jordy's wish is to fix up his Mitsubishi. He loves that car because it is the first car that he bought, and he worked hard on a farm to earn the money Bev told us that a body shop will be painting the car. She will give us more details as they come. One of Jordy's goals in life has been to have a vehicle that is not "cosmetically challenged." Now there is hope.
Tomorrow Terry, the man who donated the Blazer's tickets, is coming to visit Jordy and see "the shoes." He may also bring someone from Nike.
Susan, the Child Life Specialist, also had some good news for Jordy. With at donation, she purchased a WII Fit for the unit. She is going to let Jordy try it out first. Tomorrow when he is feeling a little better, he will put on his prosthesis and give it a try.
Bryan, the social worker, came by for a visit. He asked Jordy if he would want to talk to a 16 year old girl with Osteosarcoma that is just starting treatment. He is very willing to share his experience and reassure her.
Jordy's kidney levels continue to slowly, but steadily improve. We are hoping they kick the Methatrexate out quick.
Annie
Celebrating Great Things!
2/18
It is a GREAT evening!
Jordy was able to start his chemo tonight. They hooked him up to the Methatrexate about six o'clock. This means that by ten he will be officially done with his chemo. No more "kool-aid" in his IV. The doctors have decided to up his fluids a little to hopefully speed up the excretion process. We are hoping to go home on Sunday. It seems so odd to think that we will not be coming back for more chemo.
The staff has been very excited about the end of Jordy's treatment. He has had several nurses stop by just to congratulate him. They know that not all families are as lucky as we are.
Tomorrow night the man who donated the Blazer tickets is going to visit Jordy. He really wants to talk to Jordy and see "the shoes". That reminds me. . . Jordy (and unfortunately I) may be on the radio! Each year 95.5 in Portland does a radio-a-thon in March. They were interviewing patients and their parents. They wanted to hear about Jordy's trip to the Blazer game. I don't think Jordy or I are great radio material, but we will see.
Jordy has pretty bad mouth sores, but other than that things seem ok. He is just ready to be done, even if the sores get worse. At least this is the last of the poison!
Enjoy the sunshine and celebrate a little for Jordy!
Annie
It is a GREAT evening!
Jordy was able to start his chemo tonight. They hooked him up to the Methatrexate about six o'clock. This means that by ten he will be officially done with his chemo. No more "kool-aid" in his IV. The doctors have decided to up his fluids a little to hopefully speed up the excretion process. We are hoping to go home on Sunday. It seems so odd to think that we will not be coming back for more chemo.
The staff has been very excited about the end of Jordy's treatment. He has had several nurses stop by just to congratulate him. They know that not all families are as lucky as we are.
Tomorrow night the man who donated the Blazer tickets is going to visit Jordy. He really wants to talk to Jordy and see "the shoes". That reminds me. . . Jordy (and unfortunately I) may be on the radio! Each year 95.5 in Portland does a radio-a-thon in March. They were interviewing patients and their parents. They wanted to hear about Jordy's trip to the Blazer game. I don't think Jordy or I are great radio material, but we will see.
Jordy has pretty bad mouth sores, but other than that things seem ok. He is just ready to be done, even if the sores get worse. At least this is the last of the poison!
Enjoy the sunshine and celebrate a little for Jordy!
Annie
Saturday, February 14, 2009
Valentine's Day ~
Kevin spent the night with Jordy, and I went to Wilsonville. I think I got the best of the deal. About 1:00 a.m. Jordy's port clotted with blood. They had to deaccess and reaccess his port. They also had to give him some medication to disolve the clots. They finished the procedures about 3:00 a.m. so neither Jordy or Kevin got much sleep. All seems to be working fine now.
The doctors told Jordy this morning that his kidneys are not functioning at their best. This has happened before, but they want to get it taken care of. They have increased his fluids (they already give him high fluids with this chemo). This has also increased his urine output! They have also increased the medication that counteracts the chemo. The doctor said not to get excited and think he might go home tomorrow. It isn't going to happen. We are now hoping for Monday. He has two therapy appointments at Shriner's on Tuesday and is scheduled for his last chemo on Wednesday. We will have to see how it all goes.
We are seeing lots of balloons at the hospital for Valentine's Day. The little kids are loving it.
Happy Valentine's Day!!!
Annie
The doctors told Jordy this morning that his kidneys are not functioning at their best. This has happened before, but they want to get it taken care of. They have increased his fluids (they already give him high fluids with this chemo). This has also increased his urine output! They have also increased the medication that counteracts the chemo. The doctor said not to get excited and think he might go home tomorrow. It isn't going to happen. We are now hoping for Monday. He has two therapy appointments at Shriner's on Tuesday and is scheduled for his last chemo on Wednesday. We will have to see how it all goes.
We are seeing lots of balloons at the hospital for Valentine's Day. The little kids are loving it.
Happy Valentine's Day!!!
Annie
Wednesday, February 11, 2009
If counts are good...last chemo next week!
Good news. . . Jordy's blood counts are good enough to start his chemo today. The doctor said that the counts are not great, but this is one time that not great is good enough! This means that if he makes his counts next Wednesday, he wil have his last chemo next Wednesday evening.
This is amazing!
The doctor told us a little more about life after chemo. Jordy will have to take antibiotics on the weekends for six months until his immune system gets back on track. This was disappointing to Jordy since the Septra pills are huge! At least he will not be nauseaus when he takes them.
Jordy has had several people (including his doctor) make comments about his recent crop of facial hair. He decided that if he didn't make counts today, he would shave. Getting the Methatrexate today will take care of his fuzzy chin (and unfortunately his hint of eyebrows and short eyelashes). It is amazing how much his hair grows in just a couple of weeks.
This morning Jordy had a check-up with Dr. Krajbich at Shriner's. He thought Jordy's leg was doing just fine. He has to take it a little easy until his counts come back up. Next week he will start up therapy again.
Have a good rest of the week.
Annie
This is amazing!
The doctor told us a little more about life after chemo. Jordy will have to take antibiotics on the weekends for six months until his immune system gets back on track. This was disappointing to Jordy since the Septra pills are huge! At least he will not be nauseaus when he takes them.
Jordy has had several people (including his doctor) make comments about his recent crop of facial hair. He decided that if he didn't make counts today, he would shave. Getting the Methatrexate today will take care of his fuzzy chin (and unfortunately his hint of eyebrows and short eyelashes). It is amazing how much his hair grows in just a couple of weeks.
This morning Jordy had a check-up with Dr. Krajbich at Shriner's. He thought Jordy's leg was doing just fine. He has to take it a little easy until his counts come back up. Next week he will start up therapy again.
Have a good rest of the week.
Annie
Friday, February 6, 2009
Closer to the end of chemo ~
2/4
Yesterday was blood draw day at Doernbecher’s. Jordy’s hemoglobin and platlets were great, but his white blood cells were a little low. He just has to be careful about getting sick. . . nothing new for a cancer patient! Hopefully he will be high enough next week to start his chemo. IF he makes counts next week and the following week, he will complete his chemo while Dr. Malempati is on vacation. I think both of them are a little disappointed, but so excited to be at the end. Then Jordy will have a chest scan and an x-ray of his leg three weeks after finishing chemo. Dr. Malempati does not do bone scans on a regular basis because when you lose a leg, the other leg will glow on the scans because the bones generate cells because of the increased stress. He will continue to have scans of his chest every three months. Of course, if he has any odd pains, he needs to go back in. That is it. I can’t believe it is to the point that it was time for Dr. Malempati to give us the information on what happens AFTER chemo. The time has gone fast!
Our next stop was Shriner’s for therapy. It was a rough therapy day for Jordy, but he was able to do some balancing and a few walking exercises. It is sort of interesting. For most people, when you exercise and get sore, it only takes a little while to get to feeling better. For someone who has low blood counts, it is not quite so easy. The soreness is caused by tiny muscle tears. When your white blood cells are low, you do not heal normally. Jordy just has to get his counts up and the soreness will heal. It is hard to be patient, but he is doing pretty well.
Jordy is off with his friend to look at cars today. I am going to enjoy a day at home!
Annie
Yesterday was blood draw day at Doernbecher’s. Jordy’s hemoglobin and platlets were great, but his white blood cells were a little low. He just has to be careful about getting sick. . . nothing new for a cancer patient! Hopefully he will be high enough next week to start his chemo. IF he makes counts next week and the following week, he will complete his chemo while Dr. Malempati is on vacation. I think both of them are a little disappointed, but so excited to be at the end. Then Jordy will have a chest scan and an x-ray of his leg three weeks after finishing chemo. Dr. Malempati does not do bone scans on a regular basis because when you lose a leg, the other leg will glow on the scans because the bones generate cells because of the increased stress. He will continue to have scans of his chest every three months. Of course, if he has any odd pains, he needs to go back in. That is it. I can’t believe it is to the point that it was time for Dr. Malempati to give us the information on what happens AFTER chemo. The time has gone fast!
Our next stop was Shriner’s for therapy. It was a rough therapy day for Jordy, but he was able to do some balancing and a few walking exercises. It is sort of interesting. For most people, when you exercise and get sore, it only takes a little while to get to feeling better. For someone who has low blood counts, it is not quite so easy. The soreness is caused by tiny muscle tears. When your white blood cells are low, you do not heal normally. Jordy just has to get his counts up and the soreness will heal. It is hard to be patient, but he is doing pretty well.
Jordy is off with his friend to look at cars today. I am going to enjoy a day at home!
Annie
Tuesday, February 3, 2009
Therapy through fun and games ~
2/2
Good evening.
Jordy and I finally made it home from Shriner’s. There was a wreck just before Brooks. We sat on the freeway for quite some time.
Today Jordy discovered the Wii Fit. Playing the Wii was his first therapy session today. He did skiing, snowboarding, and other balancing games. It really works his legs and gets him to shift his weight from leg to leg. These are all “pre-walking” exercises. The skiing was his favorite. The physical therapist says the Wii is great to make exercises a lot more exciting.
For his second session, Jordy rode a giant tricycle that he stood up to ride. It was similar to a stair stepping machine, except that he actually moved. He was only able to take tiny steps with his right leg, but he was finally able to move himself along.
It is sort of funny that Jordy’s therapy consisted of playing video games and riding a giant tricycle! Whatever gets him moving is OK with me. He did also have to do some stretching exercises and worked on shifting his weight to take steps. He has progressed enough that the prosthetist had to make adjustments on his prosthesis. It is good to see things progressing in the short time that he has been doing the therapy.
We will have to see what fun the therapist comes up with for his session on Wednesday.
Annie
Good evening.
Jordy and I finally made it home from Shriner’s. There was a wreck just before Brooks. We sat on the freeway for quite some time.
Today Jordy discovered the Wii Fit. Playing the Wii was his first therapy session today. He did skiing, snowboarding, and other balancing games. It really works his legs and gets him to shift his weight from leg to leg. These are all “pre-walking” exercises. The skiing was his favorite. The physical therapist says the Wii is great to make exercises a lot more exciting.
For his second session, Jordy rode a giant tricycle that he stood up to ride. It was similar to a stair stepping machine, except that he actually moved. He was only able to take tiny steps with his right leg, but he was finally able to move himself along.
It is sort of funny that Jordy’s therapy consisted of playing video games and riding a giant tricycle! Whatever gets him moving is OK with me. He did also have to do some stretching exercises and worked on shifting his weight to take steps. He has progressed enough that the prosthetist had to make adjustments on his prosthesis. It is good to see things progressing in the short time that he has been doing the therapy.
We will have to see what fun the therapist comes up with for his session on Wednesday.
Annie
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