Cody Katen Update

2/23/2006 9:38 AM

Good Afternoon, it is Tuesday and we thought that we would just give a

quick update to let you know that Cody is home and doing wonderful

after his first two treatments. We will not know specifically how the treatments are working for at least 4 - 6 weeks. At that time they will do another CT Scan and then we will let you know the results. However, at this time Cody can tell a difference in how he feels. For about five days after his first treatment he was better than we have seen him for months. His appetite and energy levels have been amazing. Then at the end of his 5 day Prednisone treatment, he mellowed out a little. Better than he has been, but not as good as the last few days. Hey, we told Cody that we will take what we can when we can have it, and in the end it is all about His glory, whether it is on the mountain tops or in the valley. He agreed with his usual Dennis Quaid smile. His doctors told us that the chemo meds and prednisone will work immediately in his system. His system is very inflamed with the PTLD and the meds should deal with

that first. We were also excited to see his hematicrits come up a little, and still no rejection. The doctors are encouraged and we continue to praise the Lord. In the mean time, we stand in awe of our Lord's work in our lives and the lives of others around us. We will now work at getting our lives back to as normal as we can. Jason will be back at work this week and in the pulpit on Sunday. It will be a different kind of normal, but one we will adapt to. We know this because of our Lord's sufficient Grace that continues to work in our lives.

We would appreciate your continued prayers. They are a blessing in our

lives, and they mean so much. There are not many times one gets to

witness the universal church coming together to mutually bless one

another through the acts of prayer and kindness as we have witnessed.

We can picture the prayers that leave your lips on Cody's behalf into

the throne room of our Lord. What a tremendous thought to ponder. Thank you for ministering to us in such a powerful way. We also want to thank you for your cards, emails, hugs, gifts and support on every level. To helping Jason with his responsibilities to making sure we are taken

care of here at home. The cookies, visits, and phone calls have all

been a special blessing that we hold dear to our hearts, what a

wonderful testimony of the work of the Spirit ministering through the

body of Christ. We also want to thank Countryside Bible Church for

being available to help Jason and the elders with the responsibility of

teaching, for the expense of sending Rocky to us and for his

willingness to minister in this capacity. It was a blessing to all of us at Taylor Creek Church.

2/14/2006 9:34 PM

We did it..... or should I say Cody and the Lord did it. At 9:30 this morning they gave Cody some anti-nausea medicine and some Tylenol along with some Benadryl to help with reactions to the meds. Cody did really good with the Cyclophosomide (Chemo) and did pretty well with the Rituximab (Rituxan). About 10 minutes into the Rituximab his eyes got glassy, his face began to flush and his heart raced a little, and then he began to feel nauseas. His vitals were great through the whole process and he was able to work through what they call adrenalin reaction. I think that it scared him a little. It certainly did us. Every half hour they increased the rate at which he was receiving the medication. About the last hour and a half he began to experience itchy throat and ears. They opted not to increase the rate of dosage as they felt that was his limit. At 4:30 he finished the infusions and was told by his nurses that he handled this treatment better than any of their other patients. He was grinning from ear to ear. For Cody this meant a victory.

The day was long and hard. The reality of what was going into his system was a difficult reality. It is hard to explain the emotions centered around that. Jason kept things light by teasing Cody that he was starting to glow. When he would go to the restroom, Jason would ask if his urine was glowing. It was good to laugh about it. All in all we had a long but very good day. Cody will come home sometime tomorrow. We are very proud of him and so very thankful to the Lord for getting us to this point.

We also received some good news. It appears that Cody's immune system is recognizing the EBV Virus. We are thrilled. Pray for it to continue to do its job and for no rejection. His Hematicrits continue to remain the same. They also said that his tests show no iron deficiency. So they are not sure what is going on with that as of yet. They are talking about giving him some meds to help him make more red blood cells. We still do not know any more on the final bone marrow report. We consider no news as good news. Jason's mom arrived safe and sound and we are so glad to have her.

Today we met a 10 year old boy named Andrew. He was diagnosed with Leukemia several years ago and did similar treatments as Cody is going through now. He recovered wonderfully and completely. About 6 months ago he began to feel bad. They did a CT Scan and found a totally new cancer in his brain and sinus cavity. He is very sick. Please pray for this dear family. They left this morning to go home. He had his last Chemo treatment, but things do not look good for him. We talked a little with his mom. Such a sweet family. We do think that they know the Lord, from as much as we were able to visit with them. Again we are reminded of the field ripe for harvest. We see so many who are longing to heal the body... but need to know the One that has the power to heal the soul. We see that the Lord continues to stretch our mission field. We want to be a testimony and example of the peace that surpasses all understanding. In the end all that matters is Jesus Christ.

Our love to each of you. Thank you once again for being with us behind the veil. We will give our next update next week after his next treatment, unless something changes. Pastor Jason and Amy

2/13/2006 8:17 PM

Hello dear friends and family. It is Monday evening and we are home from a full day of more tests and their results. We want to thank you again, it is never enough, for all of your prayers. It has been a day of answers and taking the next step to get Cody healthy again.

We met with Dr. Parks, one of Cody's oncologists today. She was finally able to sit down and show us where they feel this cancer is. She drew us a picture of his sinus cavity. She explained that Cody's tonsils and adenoids were completely taken by the cancer, and on either side of the tonsils and adenoids as well as along the space between them is where the cancer is currently residing. The big question last week was what was the large abscess in the back of his neck. Was it an infection or was it PTLD. They have determined from today's CT Scan and other things that it is PTLD.

The preliminary results from the bone marrow and spinal fluid were back and negative as of 1 pm today. The final report will be back sometime tonight. We are anticipating that it will be no different. She said that this disease will linger for a while, but when it decides to move it will move fast, and they do not know when that will be. If it does there is a good chance that it will go into the blood stream and they really don't want to see that. So their recommendation is to begin treatment tomorrow morning. He will be admitted at 8 am and sometime after that they will start the process. His Rituxin will be a 4-8 hour infusion depending on how Cody responds to it. The Cytoxan ( which is the Chemo) will take about an hour. He will stay the night to monitor him for any immediate side affects. He will then be able to go home. We find it ironic that 15 years ago I went into the hospital on Valentines day to give birth to him, he decided not to arrive until the 15th at 4:22 pm. What a blessing to have this young man in our lives for 15 years. We praise the Lord for him and trust Him with his future.

As for the treatments, we went through the schedule for the next 6 months. He will be given treatment once a week for 6 weeks and then he will move to 1 treatment every 3 weeks. This will allow his immune system to recover before the next treatment. They have found this to be very beneficial in transplant patients. They thought that his everyday life should be pretty normal aside from the first couple days after treatment. This is a tremendous blessing, as we feel it is important for him to get back to normal life and not continue to be sick. She also told us that it will take around 4-6 weeks before he would really start to feel back to his normal self, and start gaining some weight back. He has currently lost 25 pounds and continues to drop. So this was good to hear.

He will have echos twice a week.... testing for rejection. This is really key. Their hope in lowering his meds is that Cody's "T Cells" will wake up and get smart... but not too smart. They want them to wake up and notice the EBV (Epstein-Barr Virus) and put it to sleep.... but they don't want them to get too smart and also notice a foreign organ and try to kill that off too. This is really tricky. How much do they raise his immune system to accomplish this without rejection. If rejection should set in before the EBV can be put to sleep, then the meds will come up the his immune system will be put down again, Which means that this will be a life long battle for him. This is our greatest prayer, along with the treatments to kill off any and all cancer cells currently in his system. The Rituxin can have serious immediate side effects, please pray for this not to happen, if it does, then that med will not be given at all. The Cytoxan's side effects will not be noticed for several weeks, and they will monitor him for that along the way.

We are confident in our Lord's plan for Cody's life. That it will be to His great glory and for our very best. His goodness is evident to us throughout each step. Thank you so much for your prayers, as they are invaluable. We can only trust the Lord to reveal our love and appreciation to each of you individually. Sitting in the oncology department today for the first time was a little unnerving, but we were also so grateful as it could be so much worse. All those little ones will be in our prayers. Only the Lord knows their future, but maybe, in some way we will be able to touch some with the gospel of Christ, which heals the soul for eternity. We praise the Lord that Cody knows Him and that his greatest battle is already won. Pray for him as this all hit him hard today. He has been so strong, but today it was hard. Tears were shed. We just listen and keep pointing him back to the Lord. We love you all.

2/12/2006 2:28 PM

Friday's tests went well for Cody. He felt nothing and is just a little sore where they took the bone marrow. His response was "no problem mom." However, there was some confusion between the nurses and anesthesiologist on what Cody could and could not have before this procedure. So, his procedure was delayed by two hours meaning that oncology will not get the results back until Monday morning. Again plans have changed. The team has decided to go ahead and let Cody come home for a couple of days before starting treatment. His temperature is better and they feel that keeping him would serve no reason since treatment will not start for a couple of days. They assured us of this. His blood counts still have not changed much and he continues to lose weight quite rapidly, but he looks and feels better overall.

On Monday we go in for another CT Scan and to meet with the oncology team on the results of the spinal fluid and bone marrow biopsy, and to discuss the final plan of treatment and their doses. In visiting with the Oncologist on Friday, he explained to us that this disease is rare, and very difficult to deal with on several levels. First of all because it does not present itself straight forward, hence the reason for all the tests and waiting. We understand that the abscess in Cody's neck is related to PTLD, but also may be an infection, they are trying to separate what is infection and what is PTLD, this will help them give the best doses of chemo, not too much and not too little. Second of all, because it is rare they just don't know much about it, also a reason they are doing so much testing is to make sure they know exactly what they are dealing with and where it is. Where it is typically a fast growing form of Lymphoma, they reassured us that a few days more is not going to make much of a difference in comparison with giving him the correct doses. They said that these drugs are very, very powerful and carry a lot of yucky side effects. They want to get things right from the start, especially since they are dealing with other issues other than just Cancer in Cody.

So the new plan is, on Monday we will go in for CT and meet with the oncology team, then Cody will be admitted on Monday or possibly Tuesday to begin his first treatment.

Pray for continued wisdom for the Doctors and patience for us. Friday was a very difficult day, lots of emotions and fears surfaced. It has really taken its toll on us, but the Lord is faithful and we continually go back to His sovereignty and faithfulness in our lives. We praise His name always for He is good even in the most difficult situations. We know His presence. Also pray for us to trust the Lord for all the unknowns. We constantly remember and hold to Hebrews 6:19 "This hope we have as an anchor of the soul, a hope both sure and steadfast and one which enters within the veil, where Jesus has entered as a forerunner for us, having become a high priest forever according to the order of Melchizedek." Pray for our minds to be "within the veil" at all times.

Again we appreciate each of you. Our praises continually go before the Lord for your faithful love and prayers. We cannot express how much we love you in the Lord. Pastor Jason and Amy

PS.... Please pray for Jessica, this morning she began to ask a lot of questions about Cody's situation and she took it pretty hard. She has a deep love for her brother and Grandma has been a wonderful distraction for her, but now reality sets in for her as she begins to understand what is ahead. She has a very tender heart that needs our prayers as well. She wants to know what our days ahead will be like.... I have no real answers for her other than as normal as possible.....Thanks !!

2/10/2006 8:38 AM

Yesterday Jason met with the oncology team to further discuss Cody's situation. It was more informative and gave the three of us something to discuss last night at Children's. Today Cody will be receiving a spinal tap and they will be removing bone marrow as well. They will biopsy this today and meet with us tonight regarding the results. Pray for this to be clear. Then Jason and I need to make a decision and sign consent forms on which treatment plan to go with. Cody had a lot of questions about side effects, and he is handling them all very well. He is concerned with having his red and white blood cells wiped out along with his platelets. He doesn't want to be sick all the time like he has been for the last several months. This is something to keep in our prayers. Please pray for the Lord to show us the right treatment for Cody. It is a very difficult decision to make and our hearts are heavy. The decision for transplant was easier as there really was no choice, it was just timing. This is a more difficult decision in this regard, our prayer is for peace to know God's plan in this.

As of today, treatment will begin tomorrow morning sometime. Please pray for this to go smoothly for Cody and for no immediate side effects.

Overall we are doing well, we continue to trust the Lord for all the unknown in our lives. His grace is sufficient indeed! As always we love and appreciate each of you and your prayers.

2/8/2006 11:47 PM

Hello to our dear friends and family at TCC and abroad.

So much has happened and changed in such a very short time, so I thought that I would take a few moments to keep you updated so that you know how to pray.

Many of you saw Cody at church on Sunday. He was so glad to see you all and have a chance to visit with you and see his friends at the Super Bowl Party. It was a very good day for him and we praise the Lord for the fellowship he shared and to sit under the teaching of the word again.

Monday morning he started out OK and then throughout the day slowly digressed. He was having pain in his neck, he was feeling very fatigued, and a loss of appetite. Jason spent the bulk of the day hanging out with him, keeping him company, while my mom, the girls and I made a list of groceries and needs for the next couple of weeks and then headed to the store. My mom has been putting meals in the fridge for the weeks ahead. We are so blessed to have her here. She will be going home on Sunday. We will miss her greatly, as she has been a tremendous help. Jason's mom will then arrive on Tuesday. We are not sure how long she will stay. Another blessing. We are looking forward to having her as well. When we arrived home we noticed that Cody was running a temp of 101.6.

Tuesday morning was just more of the same. Jason suggested that I call the Doctors to let them know, and they wanted him admitted immediately. With all that is going on with him right now a low grade fever can mean lots of things and they felt the best place to get a handle on this was at Children's. We spent a grueling 5 hours in ER, while they ran test after test, trying to figure out what was going on. Finally, they decided to do another CT Scan on his sinus, neck, and chest cavity. He was admitted to 4th floor around midnight.

Today, Wednesday, we received word that the there have been some changes in his CT Scan. Some of them good and some not so good.

First of all they found a small abscess in the back of his neck, thus the reason for the pain. They are treating it with two different kinds of antibiotics through IV. Apparently his current antibiotic was not able to handle this.
They also noticed that the spots on the lungs were not PTLD because they were beginning to feather out, instead of cluster together like typical PTLD. This is very exciting and a relief to us.
However they have also noticed a lot of his lymph nodes in the neck and nose area are enlarged, and continuing to enlarge. They are having a team of experts look at this, but are confident that it is the spread of PTLD.

What does all this mean? Well, tomorrow they will do a CT Scan of his abdomen and pelvis just to make sure that there are no lymph nodes there that are swelling too, and to give them another baseline. Then they will do a spinal tap and remove some of his bone marrow to make sure that this form of Lymphoma is not in the lining of his brain and that it is not in the bone marrow. They are not suspecting anything there, but there is enough suspicion to warrant this with the fact that he is not reproducing red and white blood cells. Then based on their findings they will sit down with us and put together a treatment plan. We did discuss some options and we are very encouraged with the success of these treatments with other transplant patients.

So for now we will continue to wait, pray, and trust the Lord. The ENT Doctors will let them know their diagnosis of the lymph nodes in the neck tomorrow and we will know sometime Thursday evening, and proceed from there. We are expecting treatment to begin some time this weekend or early next week. As of right now, they want him in the Inn at Children's until further notice.

We are doing very well, we have our moments here and there, but the Lord is always faithful to encourage us in some way, whether it be through His word or though His people. Cody is holding up well too. You all know how he hates the hospital, but he wants this to be done with and is willing to tolerate the Inn for a while longer. He said that there is one thing good about all of this. That he gets to spend a lot of time with his dad. This makes him very happy and us too.

We appreciate all of your prayers and love, phone calls, notes and cards. They all mean so much to us and are great comfort, a reminder that our all sufficient God and Savior is at work in all of our lives to bring glory to His most wonderful name. What a privilege it is to trust in such a mighty God. Pray for us to see every opportunity to share our faith during this time. Our heart is for Cody to be home, just being a normal kid, but we also want to make the most of this opportunity. We love you all very much. We continually praise the Lord on account of you.

2/3/2006 8:30 PM

Just a note of thanks for all of your prayers. It has been a very long day at Children's and we can say that the Lord has sustained us through all the tests and their results. We were very much at peace throughout the day and even now. Although there were some very hard moments we are confident in our Lord to continue to guide us through this time. You all mean so much to us and your prayers are felt and bring great comfort and peace.

Today Cody was to have an echo at 8 am followed by more blood draws at 8:45, then off to get prepped for his full body CT Scan. Then back to the heart center for the results where we waited 4 1/2 hours to receive the results. Only because they were consulting with the oncology team and pathology team to make sure everything was accurate, and then to decide on the best coarse of action to take.

The results of the blood tests were: Hematacrit levels were still very low at 23, his white blood cell count was also very low, and his lymphocyte count was also not in normal ranges ( too high or too low, I am not sure, as I did not catch that for sure). His blood pressures are also higher than normal for him. So they are going to watch those things very closely.

The results of the echo were excellent. They had noticed some changes on Tuesday morning and were wanting to make sure that it was not rejection. All is back to normal and they felt that the change was due to what had happened on Tues. morning. All looks great there. This is so important in regards to what Cody is facing in the days and weeks ahead. So please keep this in your prayers, that his heart will withstand rejection. One thing that they are encouraged with is that they feel that Cody and his new heart have a very close recognition of each other and hopefully that will mean that they will do well with less of his anti-rejection meds.

As to the results of the CT Scan: The PTLD (Post Transplant Lymphoproliferative Disease) has spread to his lungs. There are two relatively small spots on his lungs, that is a concern to them. They believe that this has been in his system for a few months and that his poor tonsils just could not fight it anymore. Although this cancer does not travel through the blood stream, we were a little confused as to how it got to the lungs. We will have to talk with the oncologist about that. With this in front of us they want to treat this very aggressively. They said that this cancer is treatable and curable.

So the plan of action as of right now is this:

1. On Monday they want him in for another blood draw. With his system being already weak and everything else he has been through this year, they want to see some improvement in his blood counts. They decided that the best first step is to lower his rejection meds by half, which we have already done, and give them a few days to see what his immune system can contribute.

2. Then on Thursday they will take another full body CT Scan to see if there has been any change in the spots. This will tell them what his immune system is contributing to getting rid of this, if any at all.

3. Then depending on what the updated CT Scan shows they will determine how much and which chemo drugs to use. Doing this in steps will allow them to know what is working and what is not. Also if rejection should set in then we also have a better idea on how do handle it as well. As of today, he will be admitted into Children's on Friday for three days to begin treatment. Then from there we are not quite sure, but we are told it could be a daily to every other day treatment for a couple of weeks and then it will taper as his body reacts. We have the names of the treatments so that we can begin to research them for ourselves. As of yet we are not familiar with the side effects.

Obviously, this is not the news we were hoping for, but it comes to us through our Lord's mighty hand, for His glory and our good, and we fully trust in that. Cody is doing very well, he is more upset about spending more time in the hospital than about the Cancer. He is OK with it, if God is, he says. It is important to him that he be treated normally. He doesn't mind talking about it, he just doesn't want people treating him any differently. Normal is best.

Jason and I are doing well. We have our moments, but we have that amazing grace that always seems to carry us through to the next step.

Pray for our strength and continued peace. For Cody's blood counts and his heart as meds are reduces that there would be no rejection. Also pray for his immune system to have an impact on this and that treatment will be easy and smooth for him. Again, we praise the Lord for each of you, knowing that our Lord is working and answering your prayers on our behalf. Your prayers are a selfless act of love and we appreciate them so much. May His love and grace be known to you and ours as well.

2/1/2006 9:11 AM

It is Wednesday morning and Cody and Jason are still at Children's waiting release orders. So I thought that I would write you all a quick email to give you an update on all that has happened, as I understand that there has been some confusion in all that has taken place.

To begin with we just want to let you all know how blessed we are to know you and have you as part of our lives. We are eternally grateful for your love and prayers. God has used each of your prayers to personally strengthen us through this time in Cody's life. Thank you never seems to be adequate, but it is all my tired mind can say at this time.

As far as Cody. On Monday he had full sinus surgery. His tonsils and adenoids, and polyps were taken. After surgery his doctor said that all went as well as could be expected. He was pleased. All sinus's were diseased and cleared out. His adenoids which were originally going to stay, were much larger than originally thought, so they went ahead and took them as well. The tonsils were much worse than they had thought. When they got in there, they had begun to grow back down his throat, and were pushing outward on the sides of his throat. He said they were just gross and with his trained eye highly expects PTLD (Post Transplant Lymphoproliferative Disease). However, a biopsy will have the final say and so we wait for those results, continuing to trust in our Lord for whatever He has for us. We hopefully will know something by Thursday or Friday. He explained to us that PTLD is not like other cancers in that it does not spread through the blood stream, it is limited to the lymph system. It also cannot be removed. So it will be treated with med. adjustments and other forms of treatment as needed. All that to say, if his suspicions are correct. We choose to not be worried at this time until we know for sure. It is in these time we really begin to understand why the Lord told us to not worry about tomorrow, for today has enough issues.

Cody did really well in recovery and was sent home around 3:30. We got him home at 5:00 and he ate like I have not seen him do for several months. I was so encouraged. He had great spirits. We were giving him Percacet every 4 hours for the pain and he was doing great. At 5 am Jason and Cody were up to take meds and laughing and doing great. At 7 am grandma visited with him just a short bit, and at 9 am I went down to his room to give him his next dose of meds. He was not breathing when I went into his room. He wasn't blue so I knew that it wasn't heart related, so I waited knowing that he has had this severe sleep apnea. Finally he gasped for air, and I tried to wake him up, but could not arouse him. I yelled for Jason and my mom and we tried for about 10 to 15 minutes to wake him up and could not. During that time Jason had me call 911. It was a difficult call to make as it brought back many memories, but I did. By the time the fire department and EMT's had arrived they had assessed the situation as possible drug reaction. His pupils were fixed and dilated, blood pressures were extremely low and heart rate was in the 150's. His blood sugar levels were at 321. They felt with Cody's medical history that they should not try to give meds that would reverse the drug. Either way they highly suggested that he be taken to Children's where they can better assess the situation. So off to Children's they all went and I joined them shortly after. After assessing Cody they were not positive what had happened but had a few thoughts.

1. His Hematacrit levels were extremely low, even talked about having him transfused, but decided to wait to see if he would rebuild on his own. Meaning Cody lost a lot of blood. Where, is the question of the day. The surgeon said he lost very little in surgery, and we did not notice any spitting up of blood. Unless he was swallowing it throughout the night, but you would of thought that he would of thrown that up. So all in all, that is a mystery to us, but not to our Lord

2. With his sleep apnea, they thought that there also could have been a large build up of CO2 in his system, accompanied with low blood pressures and low Hematacrit counts he would not have had the oxygen flow he needed. When the brain does not get enough oxygen, things like this can happen.

3. Possible drug overdose, which was ruled out with his symptoms, and the doses we were giving him could in know way overdose him. So that leaves us with a possible drug interaction. So they completely removed him from this drug.

4. A possible crack in the skull by the lining of the brain that could have been fractured by the surgery. They did a CT Scan and ruled this out.

5. It was a combination of many different things.

So in other words, with Cody's history he just bought himself a ticket in the inn at Children's hospital to be observed and to make sure that nothing else presented itself. Once they got his blood pressures stable in the ER they moved him to 4th floor, which we know very well. The nurses were joking around with him, saying "maybe you should instruct us Cody......" They are wonderful. Throughout the day we watched his blood pressures slowly return to normal as well as his heart rate. He was feeling some pain and was wandering if he could have some stronger medication. Seth showed up at the hospital to see how we were doing and was excited to see Cody look so good. Jason and he went down to eat and I stayed with Cody. When his dinner came I set it in front of him and noticed that his lips were all red. I asked him to open his mouth and noticed that his teeth and tongue were all red as well. I asked him if he was bleeding, he told me that his throat was parched, so I told him that I was going to go get the nurse to have her look at this, because this was a concern. He was not happy with me, as he thought that I was overreacting. I went and got the nurse, she came in to evaluate. She looked at his lips and in his mouth, and then asked Cody if he had eaten any red Jell-O????? Cody gave me a look and said "nice mom". We all just laughed, as I had just given him some red Jell-O and didn't even think about that. It was a great release, although I must say Cody was not impressed at all.

I visited with Jason this morning and he had a pretty good night. He is waiting to hear from the doctors to see what their thoughts are, but feel that they will be released sometime this morning.

Thank you so much for all your prayers, Again, God has shown us how fragile life can be, and that He holds each of our breath's in His mighty hands. We continue to be amazed at God's faithfulness and goodness. He is good all the time, All the time He is good. So we wait for test results and walk each day trusting in His grace to sustain through the next step. We will let you know of any changes. I am sorry for the length of this email, but wanted you to know what was going on and what had happened, as I know that there have been many questions. I am sorry that I don't have everyone's email, so if you want to pass this on to someone who is not on the list that might want an update, please feel free.