Jordy McD Update

Jordy's still got that basketball knack!

noreply@blogger.com (Kim) — Thu, 05 Mar 2009 05:53:00 +0000

Jordy had two sessions of physical therapy today. He walked on a treadmill (forward, backward, and sideways!), walked up and down stairs, karate kicked bolsters, and other fun activities (I think Jordy would have a different term than fun). The most amazing thing to me was when he stood on a teeter-totter type of contraption and shot baskets. I am pretty sure that I would have fallen down if I had tried the same thing. I just rebounded and passed him the ball. He also stood on a trampoline and shot baskets. The therapist told him to use his legs. He told her that his mom and coach used to say that to him all the time!

After a long day in Portland, Jordy went to his dad’s company dinner. The people at Smith’s have been great to us, and many really wanted to see his shoes that were signed by LeBron James. It was wonderful to hear the encouraging words from Kevin’s co-workers and their families. They are a great group of people.

For now Jordy is going to therapy and waiting to get his in-patient therapy at Shriner’s scheduled. Oh, and some other good news . . . on Thursday Jordy will be meeting with the man who is going to paint his car as part of his wish with the Children’s Cancer Association. We will let you know details as we find them out.

Enjoy the sun and the rain.

Annie

Updates on furlough ~

noreply@blogger.com (Kim) — Thu, 05 Mar 2009 05:50:00 +0000

Due to circumstances beyond my control this news update system is taking a break. Since Jordy is done with his chemo, and gaining weight and hair there is no need for a semi-daily updates. Jordy has weekly therapy sessions, he will have a full body scan in mid March, and will start two weeks of intense therapy by the end of March. I will report on these as needed. When new or interesting news about the McDonald family happens you guys will be the second or third to know. The McDonld family wishes to thank everyone for supporting them this last year. The communities of Central Linn and Scio should be proud of the way they help and support families with unexpected needs and hardships.

Blazer Training Camp a possibility for The McDonald boys!

noreply@blogger.com (Kim) — Mon, 23 Feb 2009 05:15:00 +0000

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

Bummer...no last massage for Jordy ~

noreply@blogger.com (Kim) — Mon, 23 Feb 2009 05:13:00 +0000

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

Congratulations Jordy & Family!!!!

noreply@blogger.com (Kim) — Fri, 20 Feb 2009 16:46:00 +0000

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

Celebrating Great Things!

noreply@blogger.com (Kim) — Fri, 20 Feb 2009 16:44:00 +0000

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

Valentine's Day ~

noreply@blogger.com (Kim) — Sun, 15 Feb 2009 04:11:00 +0000

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

If counts are good...last chemo next week!

noreply@blogger.com (Kim) — Thu, 12 Feb 2009 06:07:00 +0000

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

Closer to the end of chemo ~

noreply@blogger.com (Kim) — Fri, 06 Feb 2009 18:12:00 +0000

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

Therapy through fun and games ~

noreply@blogger.com (Kim) — Wed, 04 Feb 2009 00:44:00 +0000

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

Jordy has his prosthesis...and Annie has her bathtub!

noreply@blogger.com (Kim) — Sat, 31 Jan 2009 00:01:00 +0000

Good morning.

Jordy and I got home yesterday just in time to go watch the Scio basketball games. It was great to see everyone’s reaction to Jordy’s new leg! I expected the kids to ask first about the LeBron James shoes, but they seemed much more interested in his leg. Speaking of his leg, due to his limited range of motion at this point, he had been removing it when he got in the car. Yesterday he wore it home from the hospital (I refused to carry it to the car!) and to the basketball game. Also, Jordy was worried about it fitting under his pant legs of his jeans. No problem. It is nice to see him in something other than sweat pants.

This admission to the hospital was very busy for Jordy. Many people stopped by to see “the shoes”. It was nice to get to visit. Jordy was also able to show off his prosthesis. He received many comments about how tall he is. Most people at the hospital see him in a bed! The best sight is Jordy’s smile. He has worked so hard through this whole ordeal. Now he can see the light at the end of the tunnel. Two girls who finished their treatment last summer and fall stopped by to see Jordy. It was nice for him to have the opportunity to talk about life after chemo. It can be a difficult transition. You get so used to doctor appointments, hospital stays, etc., that everyday life can seem empty. I am glad that both Jordy and I have college to look forward to. It will definitely be different, but good to be onto another phase of life.

A few of you know that we have been struggling with installing the bathtub in our master bath. We did most of the remodeling of the bathroom before Jordy’s graduation, but the bathtub sat in our living room. We just have not had the energy to get it done since Jordy’s cancer diagnosis. Last weekend Kevin installed the tub! It is so WONDERFUL! It is amazing how things just bug you, but you just can’t get them done. This is just one more sign that soon we will be back to boring chores around the house. Sound wonderful to me.

Have a great weekend.

Annie

Temporary Prosthesis on Monday ~

noreply@blogger.com (Kim) — Sun, 25 Jan 2009 00:50:00 +0000

1/22 ~ 1/24

Jordy and Annie are home in Scio tonight. Jordy did not pass his blood test and since he had two units of platelets this week they sent him home for the week. They will try again next week. On the way out of the hospital Jordon experienced double vision. It did not improve so back to the hospital they went. The doctors checked him over and not finding anything he received a CAT scan as a going away present. The scan showed NOTHING abnormal. (It is really tough to use the word nothing with abnormal when describing a McDonald so mark this day on your calendars.) The doctors then sent them home late this afternoon, early evening. If the vision does not improve they will have to see an eye specialist later.
George

Jordy’s double vision seems to be going away. Thank goodness! He said it only bothered him one time in the afternoon when he was watching television. The doctor thought it might be the result of a virus. I also think his platelet counts are going back up. Jordy’s nose runs a lot, but when his platelet counts are low there is a small amount of blood with it. The runny nose is a side effect of not having any nose hairs. You just don’t realize how important the little things are until they are gone . . . even nose hairs!

Monday is the day that Jordy will receive his temporary prosthesis. He is sort of concerned about the bulk of it. The sockets last week were pretty big because the swelling was much more noticeable when they did the initial cast. It is a long process to get to the final product, but we are well on our way.

Hopefully Jordy can get his last Doxorubicin this week. It will be nice to check off one more thing!

Annie

Oh What A Night!

noreply@blogger.com (Kim) — Fri, 23 Jan 2009 02:12:00 +0000

Well, the Blazers lost, but it was a GREAT night.
Like any McDonald event, there were a couple of quirks along the way. . .
The limo driver, Willy, picked Kyle and Jordy up at the hospital. He asked them where they wanted to eat and offered a few suggestions. Red Robin was the only one that sounded familiar, so Red Robin it was. The driver gave them a hundred dollar bill, and said to enjoy dinner. Kyle said that the waitress sort of looked at them funny when the paid for a bowl of soup and a burger with a hundred dollar bill! We are pretty sure that the used their magic marker to make sure the bill was real.
Next, the were off to the Rose Garden. This is where the story gets interesting! They got out of the limo, and Jordy asked about their tickets. Willy said he thought they already had them. Panic set in, but Willy straightened things out. He did not get the e-mail from the owner of the tickets that he left the tickets in his desk in VANCOUVER! So they hopped back in the limo and headed to Vancouver. As they approached the company office, Willy said, "Hang on, it may get a little rough". Jordy said he continued to explaining that the office was easy to see, but hard to get to. They traveled on some back streets, but eventually reached their destination. Willy picked up the tickets and whisked them off to return to the Rose Garden.
Finally, they arrived. Just in time for tip-off. Their tickets were just to the right of center court and in the FRONT ROW! For those of you who were looking for them on TV, Jordy went undercover and wore a stocking hat (making it impossible to spot his shiny head). Also they way the cameras were positioned, the score was displayed directly covering them.
During the third quarter a man came up and gave them passes for the locker-room after the game. After the game finished, a man from Nike talked to the boys and took them to meet LeBRON JAMES! He signed the shoes that he wore in the game and gave them to Jordy. I think Kyle just about passed out.
The limo ride back to the hospital was fun. Willy said that the boys had lots of stories to tell. Boy, was he right.

As far as the Blazer Dancers go . . . Jordy said that a few were definitely on the "veteran squad". In other words, they were older looking than he expected. I though that was a great comment.
Kyle and Jordy sent a text while they were heading out of Vancouver that the price on the tickets was eight hundrend dollars each! They were amazed.
I am attaching a few pictures from last night. I will send a picture of Jordy with Lebron James' shoes later today. Kyle and Jordy forgot to take a picture of Lebron with Jordy. I think they were both so excited and surprised that their brains were on overload. It is ok, they have the picture in their minds and the smiles to prove it.

It's a lovely foot....as far as feet go ~

noreply@blogger.com (Kim) — Wed, 21 Jan 2009 05:12:00 +0000

1/19
Jordy had his Methatrexate level checked this morning. It has to be less than .10 in order to discontinue the Leucovorin that he takes every six hours. Guess what? Jordy’s level was .11. This means that he will have to continue the medication and have his blood tested in Portland in the morning. We are also going to have his hemoglobin tested. Jordy was pretty tired today and his levels were pretty low last weekend. The doctor wants to have his counts up so that he can enjoy the Blazer game. He will probably have a blood transfusion tomorrow afternoon.

Jordy also had his first fitting for his prosthesis. Some of the pictures are attached. The first one shows the prosthetist fitting the sockets onto his leg. On a whole they fit pretty well, although a lot of the swelling has gone down so they may add some padding to the temporary. They may also have to add a door to the back of the top part because Jordy’s heel is too big to fit through. It was really interesting, but next week will be even more exciting. They will add the post and his foot to the socket. We did see his new foot today. She took it out of the UPS box to show it to us. It is a lovely foot . . . as far as feet go.

This week is full. Tomorrow, back to Portland for blood work and possibly a transfusion; Wednesday, the big game; Thursday, more chemo, and home on Saturday night. This will be Jordon’s last Doxorubicin (Sp?). Yeah!!!! He will have a week or two off, then two more weeks of Methatrexate. Wow, it is amazing that the chemo is almost over.

Success with meds & a Blazer game!

noreply@blogger.com (Kim) — Wed, 14 Jan 2009 04:11:00 +0000

1/12
Jordy and I had a successful trip to Portland today. His Methatrexate level was low enough to discontinue the medication that counteracts the chemo. This is especially good news because instead of having to take meds every six hours, tonight we can sleep! Tomorrow will be spent getting ready to head back to the hospital on Wednesday.

1/13
Big news for Jordy . . .

The Child Life lady from Doernbecher called today. She has two tickets for the Blazer game on Tuesday (of course Jordy was interested). The LIMO will pick Jordy and Kyle up at Doernbecher and take them to the Rose Garden. They will have dinner and SHOOT AROUND WITH THE TEAM! Jordy will probably be an honorary team captain and they will have COURTSIDE, CENTER COURT tickets. This is such a wonderful opportunity. The Child Life lady watches every Blazer game on TV, and she is so jealous!

More details to come . ..
Annie

'Time' ~ seems to have gone by fast...

noreply@blogger.com (Kim) — Mon, 12 Jan 2009 03:38:00 +0000

We are finally home. Jordy has still not completely cleared the Methatrexate, but it was low enough that the doctor let him come home. He has to take medication to counter-act the chemo every six hours, and we have to go back to Doernbecher in the morning for another blood test. We decided that we really wanted to come home instead of staying at Wilsonville. Since we go back on Wednesday for the same chemo, we wanted to take the chance to sleep in our own beds. It is a rare treat these days.

Other than some mouth sores and a little nausea, Jordy is doing pretty well. The cold seems to be a little better. Jordy only has four more admissions for chemo!!!! People ask Jordy if it seems like it has taken a long time. He says (and I would agree) that it has really gone very fast. It seems like it was not that long ago that things were just ordinary. Now we are rolling toward a new “normal”.

Annie

Janury 19th ~ the big day!

noreply@blogger.com (Kim) — Sun, 11 Jan 2009 21:58:00 +0000

1/7

Jordy passed his blood counts today so he is hydrating and will start his chemo later this afternoon. He will have his regular 4 hour infusion, then we just wait until Saturday or Sunday for it to clear out of his body.
We do have some big news today. . . we have a date for getting Jordy's prosthesis. On January 19th the prosthetist will try out the socket (the part that his foot will go into). She will also take measurements and such. The big day is January 26. He will go to Shriner's to get his temporary prosthesis and meet with the physical therapist. This is great news for Jordy. Kevin is hoping to attend that appointment. You can imagine Kevin is very interested in the mechanical aspects of the process.
Last time he came, we had to keep him away from the tools! The prosthesis will be a great early birthday present for Jordy ( his birthday is Jan. 31). I teased him and told him that his only present would be his leg. . . what more could he ask for? He has assure me that he can think of a few things.
I guess I will have to do a little shopping on our days off.
Tonight is Candlelighters dinner. No hospital food!!!!
Annie

Filling in the details ~

noreply@blogger.com (Kim) — Fri, 02 Jan 2009 15:24:00 +0000

Happy New Year!

I just wanted to add a few details to the update from yesterday. Jordy’s appointment with Dr. Malempati was somewhat disappointing because his counts were not high enough, but he had some positive comments. He did say that Jordy has done a good job of keeping up his eating. Jordy has always struggled with keeping his weight up. For those of you who did not know Jordy as a small child, he had a number of food allergies that severely limited the food that he could eat. For the most part, the allergies have resolved themselves, but he is still thin. It was good to have Dr. Malempati acknowledge the effort that Jordy has put into eating. He also said that he feels like as long as Jordy keeps up the good work, his weight will not be a problem for the remaining time of his treatment.

Dr. Malempati also gave us a bit of information that I had not thought of. Jordy will require more calories from because of using his prothesis. It just takes more effort to move and deal with the extra weight. This makes sense, but I had not thought of that. I don’t think eating will be a problem. Jordy has already started talking about the foods that he wants to eat once his taste buds are functioning correctly. Abby’s pizza is at the top of the list along with things like lasagna and tacos.

Next week we will find out when Jordy’s next appointment at Shriner’s will be. At that appointment he will try the test socket for his prosthesis. The socket is the part that his foot will fit into. Wednesday we will go to Doernbecher’s to have blood work done and hopefully check in for chemo. His counts should be ok so we are optimistic.

I hope the rain slows down soon.

Annie

Happy New Year! Jordy's at home ~

noreply@blogger.com (Kim) — Thu, 01 Jan 2009 19:16:00 +0000

12/31
To fill in the blanks; they went to Portland today. Jordy’s blood counts were too low. Instead of giving him blood or platelets the doctors decided to wait a week and let his mouth heal before more chemo. They will go back to Portland next Wednesday and try again. Jordy is off his Arbys’ diet until his mouth heals and is surviving on biscuits and gravy and soup. Have a good new year. George

Good afternoon.

Jordy and I are back home. His counts were a little low today. This was not surprising to the doctor or us. It is pretty hard to get counts up in just one week, but Jordy was willing to give it a try. They probably would have gone ahead if he didn’t have such bad mouth sores. This will give him time to heal and get those counts really high (or as high as chemo allows). This also changes his schedule so that he will be home for Christmas, New Year’s, and his birthday (January 31). His luck is amazing!

Tonight Jordy is going to his friends’ houses, and Kevin and I will get to ring in the New Year together. What a concept!

Enjoy your celebrations!

Annie

Home for the holidays!

noreply@blogger.com (Kim) — Sat, 20 Dec 2008 21:39:00 +0000

Jordy and I are home for the holidays!!

This was the first time that Jordy had doxorubicin by itself. In the past he had it in combination with Cisplatan. We now know how bad the Cisplatan is. The Doxorubicin by itself is easy stuff! Jordy had no nausea. He also feels much better since he received two units of blood. Jordy is normally pale, but this past week he was even paler. He almost glowed in the dark. Now he is a nicer shade of pale. Jordy’s energy level is also up a little.

This morning the doctors told us that the charge nurse had asked if they could up the rate of the chemo so that we could get home before dark. They though that was a great idea. It only made a difference of an hour, but I think it made everyone feel better. Just before we left Dr. Malempati came in just to visit. Jordy told him about his trip to Shriner’s and getting ready for his prosthesis. As Dr. Malempati left, he said, “It will be nice to see you walk in here”. At that moment it became a little more real. . . Jordy is getting close to having his mobility back. It will be a lot of work, and it will be slow, but it will happen. Wow!

On a side note (and purely selfish on my part). . .Doernbecher’s has new filtering software. It now keeps me from accessing such evil sites as knittingpatterncentral.com (alcohol?) and the Statesman Journal (racism). I just don’t get the connection between knitting and alcohol! Another benefit of being home is that I can look up knitting patterns all I want.

It is really good to be home!

Annie

Jory's leg looks great!

noreply@blogger.com (Kim) — Sat, 20 Dec 2008 21:37:00 +0000

12/17
Today has been quite busy for Jordy. This morning he had an appointment at Shriner's. Dr. Krajbich said that Jordy's leg looks great! The outside is all healed up. He said that it is time to up the physical therapy and start working on a prosthesis. Jordy's eyes lit up at the thought of beginning the prosthesis process. The physical therapist started him with exercises to bear weight, strengthen his leg and hip, and increase the mobility in his ankle. After the PT session, it was off to O & P (this is where they make the prosthesis).
Jordy was given a lovely "garment" to wear. It was like two pairs of long johns made out of cast lining. It is difficult to put on the two layers and get them pulled all the way up! After they are on, a hole was cut in the top portion and stretched over his shoulder. Picture a wrestling singlet made of nude colored cotton. It is really quite attractive. . .
Jordy declined to attach the photos of this process. Next a cast was put on from the top of his thigh to the end of his foot. After it set, it was cut off. They will use the cast to mold the "socket" that his foot will go into. The first one will be clear so that they can see any pressure points. He should get to try out the socket in the next couple of weeks (depending on holiday schedule and such). During the next couple of weeks they will make a temporary prosthesis that they can easily adjust. He will be able to take the temporary home with him. It is so exciting to be starting this process.
The last thing was to measure for his new foot (how many people get to have three feet?). . . and just so you know he will have two right feet not to be confused with having two left feet! This sort of thing is right up his Papa's line of humor. The measurement was so funny because the prosthesist is not used to working with men over six feet tall with big feet. She is adjusting well.
After checking in to Doernbecher, Jordy had visitors. . . Mr. & Mrs. Santa Claus!! Sometimes it is good to be in a children's hospital. After a great conversation, Jordy was given a basketball and an iPod Nano. He was pleased to get presents that are age appropriate.
Jordy has started his chemo and blood transfusion. It is rare that people make it this far with chemo and haven't had blood. This should help him feel better. We should be home Friday night or Saturday morning. We should beat the next storm.
Enjoy the snow or rain or whatever!
Annie

Jordy's back at Doernbecher's ~

noreply@blogger.com (Kim) — Sat, 06 Dec 2008 06:28:00 +0000

12/4

Jordy has finished his chemo infusion. Now we just wait for it to clear out of his body. He is a bit nauseaus, but the meds are taking care of most of it.The GI doctor visited Jordy today. She decided to do an endoscopy tomorrow. An endoscopy is when a small camera is sent down his throat into his stomach. Contrary to the name, it has nothing to do with the bottom end! It is a simple procedure that both Kevin and Kyle have had.This should let us know why Jordy is having such a hard time eating.Jordy and I had an interesting conversation this morning.
He was telling me that when he dreams, he usually has both of his legs. Only once he had a prosthesis.
We were wondering if there is a connection between the nerves that the were able to save and the dreams with his whole leg. We will have to ask. Another interesting thing is that if he is not looking at his foot and someone touches it, he feels it on the opposite side. If he is looking at his foot he feels it on the correct side.
One problem is that if he hits his foot on something and is not looking at it, he moves his leg the wrong way. I wonder if his brain will retrain in time.Most kids that have the rotationplasty are younger and less articulate than Jordy. It is very interesting. Today the doctors asked if Jordy would do some teaching about the rotationplasty. Jordy has learned a great deal, but we are all learning from him.

12/3

Jordy's break is officially over and we are back at Doernbecher's. Jordy passed his blood tests today and has started his chemo. He is stil having problems eating and drinking because of a sore spot in his esophougus.
The dietitician is getting in contact wiith a gastrologist. They would like to figure out this problem.
Jordy is a bit frustrated with the eating thing, because other than that he is feeling pretty good. During the last part of his break he went to the Central Linn-Kennedy basketball game and "played" football with some friends. Now it is back to the real world!
The hospital has a new database system. It is designed to save time and paper. The admission questions are halarious and very detailed. The questions can be very invasive and include things such as how many pairs of underwear did you bring? The really nice feature is a calculator that you can cick on if you lose count. Jordy and the nurse had a great time with comments on the data. For example, one question asked how your pain started. Jordy answered, "Well, when they cut ff my leg and reaatached it, it began to hurt". Jordy and the nurse laughed, and she entered that comment on the computer. Jordy's humor comes out in the strangest ways.
I think that is why he gets along with George so well!!

Off to the Dunes!

noreply@blogger.com (Kim) — Fri, 28 Nov 2008 19:49:00 +0000

11/27
Happy Thanksgiving!

Today we celebrated Thanksgiving and Kevin’s birthday by heading to Florence for the day. Kyle met us there. He borrowed a friend’s four-wheeler so that he could take Jordy for a ride. Of course riding behind Kyle was not exactly to Jordy’s liking. He needed to ride solo too. They had a great time, but their mama needed to close her eyes most of the time. Jordy thinks that riding four-wheelers is good therapy. He told me that he used all of the muscles that the therapist said to exercise. How can you argue with that?

Last night on the news, Jordy and I saw the boy who had his arm reattached after a boating accident this summer. I told Jordy that his leg looked better than that boy’s arm. He replied, “Well, he did not have his limb severed by a professional like I did”. Once again, how can you argue with that? It was good to see how he was also struggling with moving his reattached limb. It is a lot of work.

I have attached some pictures from today. Even though it rained, we had a great time. Notice there are no pictures of me. . . A) I had my eyes closed most of the time and B) I was the photographer.

For all of you shopping tomorrow, enjoy the day. I will be cleaning house, and I just may bake some Christmas cookies!

Annie

Appetite returning to normal...

noreply@blogger.com (Kim) — Thu, 27 Nov 2008 17:14:00 +0000

11/24
Jordy’s ability to eat is much improved. Today he was able to eat normally (pizza, lasagna, hamburger, etc.). Hopefully his weight will go back up. It certainly should! His energy level is returning to his “normal” chemo induced level.

Today we took lunch to Kevin and Kyle, did some visiting, picked up medications, and did a little shopping for Kevin’s birthday. It seemed like a lot in one day, but Jordy did pretty well. He even did a little show & tell of his foot. It is still looking great, although the skin is peeling a bit. The movement is getting smoother, but he still has a long way to go. Even though it is a struggle, Jordy is adamant that he made the right choice for his surgery. He is so amazing.

Tomorrow we will head to Portland for his weekly blood draw. We should be home early in the afternoon. I hope the fog stays away!

11/26
Jordy had his blood work done today. His levels were pretty low (as expected). He is pretty pale and tired, but that should change as his levels come up. Tomorrow we are celebrating Kevin’s birthday and Thanksgiving by heading to the coast for the day. It will be nice to get away from home for the day.

Enjoy your families and friends tomorrow. If you have children, give them an extra hug!

Happy Thanksgiving!!!

The cast comes off!

noreply@blogger.com (Kim) — Fri, 14 Nov 2008 05:24:00 +0000

11/12
Jordy finally had his cast removed. The doctor said that it looks beautiful! There are a couple of spots that are not completely healed yet, but it looks better than most kids who have chemo. The real work starts now!!! Jordy has some simple exercises to do to help strengthen his foot and hip.
Jordy passed his blood and hearing tests so he is able to start his chemo.
We are just waiting for him to hydrate. He should be heading home Friday night or Saturday morning . . . just in time for the Scio football game.
Tonight was a catered dinner from the Candlelighter Â’s group. It was delicious!!! We had ham, rolls, scalloped potatoes, salad, corn, and of course brownies. Jordy really looks forward to these dinners.
We are watching the Blazer game.