Make-a-Wish / Christmas 2009

Adam is doing great and Christmas this year was so much different from this time last year, and we are so thankful and blessed. As you can see from the pictures, he is doing well and keeps growing! He is now over 6ft tall! Unbelievable.

Adam also received his wish, from the Make-a-Wish Foundation and from KTM. You can read about his day, and how Make-a-Wish made it happen

Thankful!

I apologize for the lack of postings, but as the old adage goes, "no news is good news". Adam is doing well and the spots the doctor was concerned about, they have ruled out any current recurrence or relapse of the disease. They are going to do more tests in December and to watch him closely for any signs or symptoms. Other than that he is doing fantastic!

We may soon have word on his Make-a-Wish event and will be posting any news regarding that within the next few days.

It seems to hard to believe that a year ago next week this journey began and here we are today, healthy and happy. Yes, the fear is always there, but it is so different than last Thanksgiving. We are so thankful, words can not begin to describe...

Anxiety

Anxiety is defined by Webster's as: distress or uneasiness of mind caused by fear of danger or misfortune.

I am not sure that was the extent of what I felt on Wednesday afternoon, but it certainly was distress and uneasiness. Adam had his scans on Wednesday, and all went well. The day went without any issues and we got to see one of the newer doctors on his team. But then the phone call came.

"Mr. Wyatt, this is Doctor Johnson, and I wanted to call and let you know that there were two spots that were seen as active in the lymph nodes in his neck."

Yes, I felt fear, distress, uneasiness and just plain sick to my stomach. And I had to call Adam and his mother. As the doctor went on, he assured us that we are not talking relapse yet, and it could be any number of reasons why this showed up on the scan. So after more tests and blood work they determined that they are going to watch this for a couple of weeks, put him on some anitibiotics, as it may be nothing more than a virus causing a false positive reading on the PET Scan.

We go back again on October 28 and we will know more then. Until then we are trying to let the anxiety not control us. And Adam you ask? Well he is strongly in the opinion that this is a virus and he is fine. We pray that is the case.

Bengals "Who Dey"

Lots of things have been happening since the last post. Adam has returned to school and is doing well academically. He has recovered fully from the port removal. He is being just as active as any normal 16 year old boy. He is very excited about getting his license and he loves to drive. He's gotten lots of practice with driving back and forth to Cincinnati for clinic and treatments.

He was chosen for Make-a-Wish and we were notified a few weeks ago that his wish should be granted in a month to six weeks. He is so excited! We got a phone call on Tuesday (22) or Wednesday (23) asking if he would like to go the Bengals/Steelers game on Sunday the 27. Of course, he wanted to go! Lauren sent out the tickets for Adam and his dad via FedEX and we got them without any problems. THANKS Lauren and Make-a-Wish for the tickets. Adam and his dad had a good time. Bengals came back and won the game! 23-20!!!

Adam starts his job on Monday. He will be working at the Shriver Center at Miami. He is looking forward to earning his own money and saving so that he can buy his own car.

We have been so blessed by all of the prayers and well wishes from all of the family and friends around the country. Please keep them coming. Adam goes for a full round of scans on October 7th. Physically, he seems really good but I think that he may be trying to burn the candle at both ends!

Eight Months ~ November 08 to July 09

Eight months, it seems so much longer since Adam was first diagnosed with Stage 4a Hodgkins Disease. Especially those first few weeks, they seemed like months in themselves. But immediately upon hearing those words CANCER from the doctor, both Adam's mother and I began calling everyone we knew asking for their prayers. And boy did Adam get the prayers!! From people all over the United States and even in a couple countries through our Missionary friends. And those prayers have been answered.

Tomorrow, July 20, 2009, Adam will undergo surgery to remove the port catheter that was placed for his chemotherapy. Last Monday, July 13, he underwent PET Scan, CT Scan and blood work and the doctors said that the results were great, and that he is disease free!!! The tumors even though they are still present they are not active, and they have shrunk considerably. He has some spots that they feel are from the infection he had, but are of little or no concern. he said that there was some low level activity, again under the circumstances there was little cause for concern.

Of course Hodgkins is not a curable disease, but it is treatable, and there is a 55% to 60% chance that it could become active again, however the doctors have told us that if it reoccurs it will be sooner rather than later, this is why they will watch him closely over the next 18 months. But we are faithful that this will not be a concern either.

Again, it has been a harrowing journey, but Adam has shown us all what the power of prayer can do, and he has also shown his entire family and friends, the strength that he holds within him. Only once did I see Adam even cry through all of this. That was on November 24, 2008 when he was first told that he had cancer. Since that time he has remained strong and determined, and not once did I see him cry. Yes he got down and sometimes depressed, but if you saw him today you'd never know he had just went through what he has.

And to all of you, from our family, our group of close knit friends, and those of you that have only heard of Adam's journey through others and possibly this blog, we say THANK YOU! We will be forever grateful to you for your prayers, concern and support. We ask that you continue to pray for continued health for Adam, and we will update the site on occasion.

Life.....almost back to normal

Adam is doing very well. He is like any other 16 year old boy except for the fact that he's battled cancer this year. He still has to take several medications a day but the doctors have reduced them down so much, he really doesn't know what to think. He will have to take an antibiotic for three to four months to keep watch over any pneumonia that may try to flare up. He is active with his friends. He is currently working on his Ranger and has been working on the body of the truck trying to get it ready to paint. We are hoping that it will be roadworthy by the time he gets his license. Again, thanks to all who have kept him in their prayers.

Doing Good

Adam is getting along well since his last Radiation treatment back the end of May. His hair has started to grow back in, quite a bit actually and he has some color back. He says he feels great and the doctors are very happy with his progress. He goes to the doctor July 13 for all of his tests and we are praying that everything is cancer free and if so then they will remove his port!!

Again, it has been the prayers of all our friends, family and those that don't even know Adam that have gotten us through this, and even though Adam is not completely back to 100% he is certainly better today than this time in January!

Sorry for the lack of Updates

So sorry for the lack of updates, as many of you follow Adam's journey and when we do not update I am sure you get worried, but there is no need for worry as all is well!!

Adam completed his radiation with no adverse side effects Tuesday, May 26th, and as it looks right now he will be chemo and radiation free!  He will have more scans, blood work, and test sometime in the end of June, but at least for the summer he will not have to undergo anymore chemo or radiation.  From all the preliminary signs it loos like all the prayers have worked and his cancer is under control and no longer a threat.  The spots are either gone or calcified and the doctors feel that once the radiation has time to do what it needs to do, he should be completed with treatment and just have his follow ups. He even has a growth of "peach fuzz" on his entire head where his hair is already growing back.  We are all wondering just what color it will come back as...

Adam, his mother and I and our entire family are forever grateful for all of you that have prayed and kept up with Adam and given us words of hope and encouragement.  

I promise to continue to give you updates and his progress, but I am sure they will be not as often.  You can also check out his facebook page, or mine and keep in contact with us through FB.

Thanks again, and thanks to God!

Hurry Up & Wait

Radiation was supposed to start on Thursday, April 30th, however after further investigation the doctor's decided they wanted to send off his results for further observation and screening prior to doing radiation.  One of the benefits of doing a clinical trial is that we get state of the art medicines and new ideas, but a lot of hurry up and wait.  They need to make sure all their p's and q's are in place before they advance to the next staging of treatment.

So we are not complaining, as we want to make sure everything is in order and things are done correctly, but sometimes I am sure it get aggravating for Adam.

He has started back to school full time, and hopefully this will take his mind off of things and he can get back to doing the things he likes to do.  We will update once the radiation starts.  Keep praying!

Being Marked

Adam has endured many things since his diagnoses in November. From radioactive dye for the scans, to chemo, transfusions and many many labs. However today he got to endure one more pleasantry. getting marked for radiation.

He had his initial appointment today with the radiology department at the Barrett Center at University Hospital of Cincinnati. They placed him is a machine, much like that of a CT Scan, and placed him in position according to where his tumors are located and proceeded to mark his neck and chest for the EXTERNAL BEAM RADIATION THERAPY. He thought they were actually going to use a needle with ink, similar to tattooing, but they used a sharpie...a black magic marker! I thought that was funny. So now he has these little black x's on his neck chest and belly.

He also had to have an Effimask molded today. This mask has to be worn during the treatment so that the parts of his body (Head, eyes, mouth) that are not affected by the cancer do not get radiation. This will prevent radiation burns and/or other possible damage to health cells. This process was quite interesting as well. It looked like a piece of plastic mesh that the technician placed in hot water, then put over his head, clamping it down to the table. After about ten minutes, WA LA, they had a mold of his face that they will created the mask with.

The actual treatments will begin next Thursday and will last for 10-14 days straight (Not counting weekends). So another turn in his road to recovery has begun.

School days!

Adam returns to school today. He has been asking to go back for a couple of weeks and we were waiting for him to be finished with chemo, now seemed the appropriate time. We had a meeting with his school counselor, nurse, school administration, and his school interventionist on April 16th. The school has a 504 in place for Adam and hopefully this will help with his re-introduction to his classes. We still have to watch for infection and we have several weeks of radiation to do so he will be in and out of school. The school knows what we will have to be doing and they are willing to work within the 504 to help him and us as he returns to school. He has been seeing several of his classmates and is looking forward to seeing more of them now that he is returning.

We are hoping that he can get right back into his classes and do well. It has been a struggle to get him to do schoolwork until we had the home bound instructor start working with him. I am confident that he will do fine. A lot of his returning to school is to try to get him back to his normal life.

It is hard to think that this is almost over. I know that it hasn't been long, relatively speaking, but sometimes......it feels like it has been an eternity. When I think back to late November when he was first diagnosed and we didn't know if/how he was going to manage.....he has just amazed me with how well he has done. I've told him often that it is because of the prayers that have gone up for him from all around the U.S. that have sustained him and helped him to get through this. None of us could have gotten through this with the help of our friends and extended family. Of course, we have had amazing doctors and nurses who have helped us along the way and we definitely appreciate them. Even when Adam didn't want to do something, Dr. Raj would just explain why we needed to do it and Adam would do it.

I can't say that it hasn't been difficult watching him go through all that he has gone through. It has been very difficult for his dad and I to watch him go through chemo and not be anxious about him. He has just about finished this chapter and is ready to start a new one.

Amazing Day!

Today was another long and tiring day at Children's Medical Center. Scans, X-rays, Blood work, more scans, and clinic. But it ended with news that we have been praying for since November when Adam was first diagnosed with Stage 4 Hodgkins. Let me see if I can get the exact words of his oncologist...

"From the preliminary reports of the scans today we see no live spots, which means there is no active cancer cells currently in the areas that previously were active. So from these initial reports we can report that his cancer is currently in remission. This does not mean that there are not tumors, as the tumors in his neck are still there in the lymph nodes and have not shrunk from the last scans, but they are currently inactive. The tumors in his chest area are calcified. There are only two "live" spots showing any indication of activity and these we think are from the infection he had three weeks ago and is not cancer activity."

Adam showed little emotion, but then he has showed little emotion from the onset, that is just his personality. He will still have to undergo the radiation which our first "simulation" is set for April 23rd, but this is just an added deterrent to the cancer and hopefully it will remain in remission. Once radiation is complete, then the scans and tests will be completed again and then the doctors will then determine the next course of action, if any.

Today was an amazing day, and an amazing relief, and proof of our Amazing God.

Continue to pray for continued good news!!

Home Again

Well, Adam is back home and back doing the things he enjoys. hanging out with friends, working on cars, and being a teen age boy. His chemo session went well, and he came over to dad's for a few days and now we await his tests and scans that are scheduled on the 15th of April to show us what our next step is.

Chances are that they will schedule the radiation within a few weeks. We continue to pray that this is the last of the chemo.

Thankful in the Face of Adversity

The fight presses onward. The pneumonia has finally been kicked and Adam is looking forward to his last chemo session, which begins on Monday march 30. Hopefully this will be the end of the chemo and then he will move on to the radiation treatments.

As we look back to the last 5 months we can be extremely thankful for a lot of things. One, that the doctors found this early enough so that it can be treated aggressively , and secondly that Adam has not really had a lot of sickness while going through chemo. Many patients suffer extreme nausea and vomiting with many other symptoms and chemo effects. Adam, overall has not had a lot of that. Yes, he has lost his hair, and some weight, but those things can and are already coming back.

I know one thing for certain, that this kid has strength that I never realized that he had. He has more strength than his ole dad that's for sure. He has shown great strength, faith and persistence and yes, even patience in this. It is not over, but I know that regardless of how ever long his battle may be, he will make it through this.

That Pesky Litttle Bug!

Adam just can not seem to kick the pneumonia. Even though he feels great and is running no fever the doctors said that the pesky little bug is still there. This along with the histoplasmosis is not a good thing, so they have pushed back his last chemo treatment and added another, stronger antibiotic to hit the pneumonia and the histo.

He is not real happy about that, but we have to do what has to be done. So the bug just won't go away. That reminds me of that song in grade school..."the cat came back the very next day....the cat came back and wouldn't go away"

Other than that he seems to be doing great, he has good color and his activity level is up somewhat. Of course he continues to tire easily and his mother is complaining that he is not resting well, which is probably the case, but overall he is doing very good. His hair is even starting to come back in. It looks like peach fuzz all over his head, but it's a start.

Another Clinic, Another Drug, Another Transfusion

Today Adam had clinic and everything went well. His blood work looked good, however the ANC was still somewhat elevated, which means that the Histoplasmosis is active and working his system, so they prescribed another drug today to start attacking this virus.

His hemoglobin is also slowly dropping from 13 down to 9 today , so to counteract that they are going to schedule him to come back in tomorrow for another transfusion. The chemo is taking its toll on him, and his blood counts are showing it, even if he is not.

Adam knows that he is at the end of his chemo to say that he is happy about it is an understatement. Soon the constant weakness and nausea may soon be over, or replaced by other symptoms as the radiation begins shortly after his last chemo session. But at least the light at the end of the tunnel is now much closer than it was in November.

Histo What?

The preliminary results are in from all of Adam's scans last monday, and overall it was good news. The masses and tumors have shrunk somewhat, as to the amount they are unable to give us an estimate due to some other things and infections going on in his lungs. Apparently he has early stages of pneumonia and are treating him with some pretty strong antibiotic (Zetromiacin), and hopefully this will clear up within a couple more days or at least by the time he is dismissed from the hospital on Saturday evening.

The other situation "clouding" his scans is something called Histoplasmosis, which we have heard reference to early on in his diagnosis. Histoplasmosis is very common in our area of the country and probably 80% of the population have some form of it, however it is not commonly active. Apparently due to the chemotherapy and due to Adam's decreased immune system, the histoplasmosis has become active. Unfortunately they can not treat this while he is undergoing chemo as one of the chemo drugs and the medicine used to treat the Histo react "volatile" together, so once he is finished with this round of chemo they will treat the histo.

Overall he is doing well, just really sleepy again this time with the chemo. I think it is due to the drugs of course. He has also stated for one of the very few times since his fight with Hodgkin's, that he doesn't feel very good. This is to be expected, but he very rarely will say anything if he is feeling bad. But if all these things are going on inside of him, it is very understandable as to why he is not feeling very well.

He has one more scheduled chemo session at the end of March and then he will be scanned and tested again prior to his radiation. He has a preliminary schedule set for his "markings" for the radiation in April. So the next step in his fight will be soon upon him.

Scans

Adam went for his scans on March 2. I got a phone call from the doctor who said that the scans showed some shrinkage but at the time of the phone call he didn't have specific numbers for me. When we go in for chemo they should have all the information from the CT, PETT, and x-rays.

We are 2/3 of the finished with chemo, only two more rounds and then radiation. Adam is starting to get excited about the prospect of being finished. He is doing school work with a homebound tutor now and we are trying to see if he is going to get caught up with his classmates.

We go back to the hospital for a chemo admit this week. I can say that I'm very thankful to be living this close (one hour) to the hospital. Some people that we've met have traveled a very long distance to come to this hospital.

Adam is doing well overall. He has an infection somewhere and is on antibiotics. I'm just glad that this didn't put off his chemo and he didn't have to go into the hospital for IV antibiotics. I will log back on and give an update about his scans after we get more information.

Roller Coaster

Adam's journey to becoming cancer free has certainly been a roller coaster ride. Even more so the past week and a half. And what is so bad about all of it, is that he actually says he feels fine. Not sure if his mother and I believe that all the time. We think sometimes he tells us that so we don't worry more than what we already do. The roller coaster the past few days has been his blood counts.

He had to go and get blood last week as his hemoglobin was down. After getting the blood he began to really feel good. He had more energy, had better color and just felt good over all. Then on Tuesday this week his blood counts came back and his platelets were low. It is called Thrombocytopenia, which is the big word for a decrease in the number of platelets (PLT), which may lead to low blood platlet count. So he may need to have platelets. Other than that he seems to be doing really well this week. All his other counts were good and he has even started in home bound studies to allow him to stay on track with school.

Next week it is back onto the roller coaster and more tests. We are looking forward to the results of the tests he has next Monday as this will tell us how the chemo is working. Then three days of chemotherapy.

It does seem like a roller coaster, but just like the roller coasters in the amusement parks, sooner or later you have to get off, and just down the road, he will be cancer free and this ride will be over and he can get on with his life.

Another Turn in the Road

After what seemed like a very short weekend, Adam went back home. He seemed distant and quiet, but then he is always distant and quiet. It shouldn't alarm me, but it does. Sometimes I wish he would talk, but when asked how he feels his reply is always the same "I'm fine." Nothing more and nothing less.

Except for Sunday. When I asked how he was he stated that he was "sore all over and my lymph nodes hurt" He complained of being dizzy the night before, but then he told me that he fainted or as he called it, "kinda passed out" early in the morning when he got up to go to the bathroom. We found out this morning the reason.

His nurse called me at work and left a message to call her, it sounded urgent so I immediately called her back. She wanted an update on Adam and wanted the information about the fainting spell. She then proceeded to tell me that Adam's hemoglobin was under 10, which normally calls for a blood transfusion, and that they want him at the hospital in the morning at 8:30 to do a blood workup and very likely give him blood.

This was something that they had told us was a possibility, but it still was somewhat alarming, as the day before we were told his counts were good. However, Adam was even more perturbed.

But the bottom line is that this last round of chemo, kicked his butt in a sense and in order for us to continue to fight this thing with all the energy he has, he will possibly need this blood transfusion. So it's off on another turn in this journey.

Can't Wait Until This Is Over!

Those were the words that Adam spoke to me last night while we had dinner. He has felt crappy all day. Soreness, aches, dizziness and just plain worn out. He hasn't really felt like eating, and all he wants to do is just lay around. This is normal after chemo, but it just seems to get worse with each session.

It didn't help that Dad had to give him a shot yesterday morning and had to stick him twice, because I didn't get in the first time...

We went to IHOP for breakfeast and we all ate too much, and even though it was good, we all seemed a little yuck after wards. But then again, all you can eat pancakes can do that to you. He is trying to stay upbeat, but we can all tell that this is really starting to tear him down. The straw is about to break the camels back, but we have to smile and keep our spirits up, there are only a few more sessions of chemo left and then radiation. Then it will be over. At least the hard part. Monthly visits or quarterly visits sound very appealing right now.

When will it begin?

After coming in for chemo and having to wait to get a room, all Adam can think about is when will chemo start and stop. His chemo started late because they were waiting to dismiss some other person who was on the floor. I can't believe sometimes the amount of people who are dealing with cancer, ranging from the smallest little baby to adults. It just doesn't seem to end.

We got into a room around 8 o'clock last night which put off his first dose of chemo. Today, he is very quiet and not talking much. He slept quit a bit, according to his dad. He hasn't eaten much of anything. He says that he isn't feeling bad, just not hungry. They have lots of fluids going into him and that is putting off him eating real food.

I've asked several times if I could order some food for him and it's always a "No". I have finally gotten him to agree to eat a popcicle (grape). That always makes him feel a bit better. Yeah! for grape popcicles.

School!!! Adam has been working on his own without any help from school. He's gotten a couple of packets of work and has been working on them. We have been trying to find someone who will tutor or at least come in and help from time to time. No luck from the school and the school interventionist is emailing and calling the school to find out what is what. I think that we may have a solution with having a friend tutor Adam in the subjects that he is having problems with so that he can get the work done that he needs to have done. This will get worked out. I'm just going to have to keep pushing the issue!

Happy Birthday

The ABC's of HL

Another clinic has come and gone. This one was much more tolerable than the last one when we spent hours waiting for room, doing nothing else, but waiting.

Today we had a GFR. GFR - glomerular filtration rate is the best test to measure your level of kidney function. We arrived at the hospital at 8:00 and went to nuclear medicine and they injected Adam with some kind of nuclear dye. After taking a blood for a CBC. Then an hour later they brought us back and they took scans of his kidneys and drew more blood. An hour later this was done all over again, and this was completed three more times. What the test indicate are how the kidneys are functioning. Due to the extreme dose of drugs used in this DECA chemo sessions, this needs to be monitored before each chemo session. In between the blood work and scans we met with an Audiologist to have a AMT completed. This test is done to check the ear drum and the nerves in the ear. Again, due to the high doses of chem0, these tests must be completed to monitor hearing and/or any potential hearing loss.

Adam has been experiencing some hearing loss, so we were kind of anxious to see the results of the AMT. The news was somewhat good, as it indicated that there was a small amount of hearing loss, however they felt it was due to the congestion and fluid build up behind his ear drum. He has had a cold and a chronic cough for a few days and they felt that this needed to be treated and another AMT run to make sure that the hearing loss was due to the congestion and fluids and not the chemo.

Then after the GFR, and the AMT we had to visit the clinic for our bi-monthly chat with the oncologist. Then went over all the same things that they go over with each visit, discussing the medications, such as the GCSF, and the BAC, and all the other types of medications he takes PO (by mouth).

Overall the Dr's are pleased with Adam's progress, his blood counts were down, but up from the previous draws on Monday. He continues to move along, doing what needs to be done and hopefully the tumors and masses are continuing to shrink. His next chemos session begins the 11th, a day after his 16th birthday and then of course more tests will be completed then to see what progress has been made on the cancer.

Routine

Not that having Hodgkins is routine, but it seems as though we are getting into a routine schedule. Chemo at the hospital, labs, labs, clinic, labs and then Chemo again. This past week due to the massive snow and ice storm, clinic was cancelled, so it broke the routine somewhat.

Normally clinic is the day when they schedule as much into 8 hours at the hospital for outpatient related issues as possible. Blood work, tests, x-rays and then a check up with the oncologists. Labs are a routine visit to the nearby hospital for blood draws, which enables to see how Adam's counts are doing. We can pretty much tell anymore by his actions without even having to draw blood. If he is easily fatigued and just kind of laying around and/or nauseous, we can pretty well figure his counts are going to be down. Labs are usually drawn twice a week.

Of course chemo is an admission to the hospital and they administer the chemo drugs intravenously.

This has now been the routine for the past 3 1/2 months, every 21 days. Does not seem that long. However, this month is a little different. As I already said the winter storm kind of put a bump in the routine, but also on February 10th, Adam will be 16.

Even though it happens to all of us, every 12 months, birthdays are special and not just a routine. This birthday will be even more special. At least as parents it will be. I am sure his mother as well as myself will look back over the past 16 years and see what this young man has accomplished and how he has grown and matured. And then we will see where he is now and how strong he has become.

Yeah we all get into routines in everything we do in our lives. Regardless if it is just the mundane tasks or the schedule brought upon us by sickness or other outside influences. Routines are there to make it a little more bearable, I suppose.

But as I look towards Adam's birthday I realize that his routine has been altered significantly. As a routine, most 16 year old boys are getting their temporary driver's license and looking forward to getting their first car. Adam, even though these things are part of his routine, and he wants more than anything to have that first car and drive, Hodgkins is also now part of that routine. Along with the Chemo, the labs and clinic visits. I know it's not easy for him, and I know having to share your 16th birthday with this hanging over you has got to be difficult. So as the day approaches an Adam becomes one year closer to becoming a man I hope we can step out of this routine and celebrate life and not focus on our current routines.

Still Being a Teen

Most parents will be able to relate to this post I am sure. Most teenagers do not understand the importance of keeping in touch with their parents when they are not at home. Even though we say "call me" that tends to get lost in the shuffle and the teens get caught up in their activity and mom and dad are the last thing on their minds.

When this happens, teenagers should understand that their parents are sitting there waiting and having these horrible visions run through their minds of their child being involved in an accident, or laying in a jail cell or worse. My mother was always afraid of things and always told me to make sure I had on clean underwear before leaving...in case something like that happened.

Most times, when a teen doesn't call in, one of these events have not taken place, it's just the fact that the teen really is not interested in stopping what he/she is doing to check in with the parents.

Well imagine if you will this scenario happening with Adam at this current time in his life. As parents we are focused on getting him better and making sure that he is doing everything he needs to do to make that happen. At the same time we don't want to muffle his teen experience and we want him to maintain his relationships even though he has cancer. It has been made very clear to us from all the experts that it is important to allow Adam to continue leading as normal as a life as possible.

I guess that means not calling when he is out with friends.

His mother began to get worried as she had not heard for him in some time, and of course his cell phone was left at home.

As a parent, panic sets in. Visions of horrible things begin to move across our minds. We try to remember..."Did he put on clean underwear??" Then they come home.

It is very difficult for us to remember that Adam is still a teenager, with all those teenage emotions, feelings and confusions. He also still needs his freedom and independence to continue to find out who he is and who he will become. Even though he is dealing with a disease that has changed all of our lives, it is not changed the fact that he is still a teenager.

So did he get in trouble for not checking in with mom?

He said he did, but I doubt it was as bad as he made it out to be. I mean, he is still a teenager.

1/3 of the Way

Well, chemo session #3 is completed. Two days in and back home. So far Adam seems to be tolerating the new drugs very well, but the real test comes later in the week and once we see his labs. So far though his counts have been good and there is no reason to think that this new set of drugs are going to cause him to react any differently.

We met with the radiation doctors and they explained what type of treatments they will be administering once the chemo is completed. He will have 2-3 weeks of radiation, every day, Monday thru Friday, for about 15 minutes each day. Now he will not actually be under the radiation for that amount of time, but those are about how long the sessions are. They are going to be localizing the radiation in the neck, chest and lung areas. This could pose problems for him in the future as they are going to be close to the heart. However any long lasting effects are minimal, but he could possibly acquire heart disease at an earlier age. It is a very minimal chance, but it is there.

He will have three more sessions of chemotherapy, and then 3-4 weeks after those are completed he will begin the radiation therapy. Then, if all is well he will be completed with the treatment phase, and will move into the follow up phase.

Things seem to be moving along at a good pace, and the treatments are working. There is a light at the end of this tunnel.

Hurry Up and Wait

We are currently at the hospital, in clinic waiting for our room. Adam was a scheduled admit for Chemo today, but we still have not been put in a room. We have been here since 8:15 this morning and it is now 12:30. Oh well, that is hospitals for you, hurry up and wait.

The news today is that, Adam will definitely be doing radiation, but when is up in the air at this point. It will be after his chemo sessions. right now they are say that if everything goes well, and the tumors continue to respond as well as they have, we will have this chemo session and then 3 (maybe 4) after this, then the radiation 3-4 weeks after that for a period of 3-4 weeks. So if everything goes well, he should be out of the treatment phase by October 1, 2009. Not bad. And hopefully cancer free!

Adam did receive some good news today. He is eligible for the Make-a-Wish Foundation. He wished for a car, but they could not provide that of course, but they did say a family trip to Hawaii could be granted!! YEAH. But it is his wish, and they are going to bringing by some literature later during his stay this time regarding what he can wish for. I think honestly, his wish would be for the cancer to be gone...

Good News

We received some good news on Wednesday regarding all the tests Adam underwent on Monday. It looks as though the chemo is doing what it needs to do to get Adam back to being 100% cancer free. On the majority the doctor has said that the tumors and the masses have shrunk in size from 45-55%. This is outstanding news, and we are all excited to know that all this work is accomplishing the goal.

However, today we received another call from his doctor and he stated that after looking at all the tests and the effect that the chemo has had on the cancer Adam is still going to have to undergo radiation. He said even though the disease has shrunk considerably, it has not shrunk enough for Adam to be considered a fast responder. So the chemo will continue with a couple new drugs, and then in about 3-4 months he will undergo radiation. The good news is also that no one has said anything about surgery as they had discussed before, so this is great news.

The pesky mass in and around the neck and clavicle area are the ones that have not responded as quickly as they have hoped, so even though the news is good, we need to continue to battle this as aggressively as possible. The doctors have indicated that our goal is to eradicate this disease completely and to do that we need to fight it as hard and as aggressive as possible.

So as Adam looks ahead he can be excited that what he and the doctors are doing is working. We just need to continue to work hard and fight with all we have. So to say we have good news and bad news is not really the case, because we knew going into this that radiation was probably inevitable. We do say though that this is definitely good news and as long as we see these tumors decreasing it is good news!

An All Day Extravaganza!

Today is actually a day that we have been looking forward to. Even though it means spending the entire day in the hospital going from one department to another, getting poked and prodded and having to ingest nasty liquids and then have radioactive die put into your veins. Yes, I said we were looking forward to this. Well at least Adam's mother and I are looking forward to this day. Adam on the other hand may not find it as stimulating.

But, the tests are being done for a very important reason. It will tell us just how much the tumors have shrunk and if the chemotherapy Adam has been undergoing is doing what it needs to be doing. it will also initiate the next few months of treatment and how we will go forward from this point. Of course, both the doctors, Lisa, Adam and myself are sure that the treatments are working. Now to find out just how much. We will receive some initial results later this afternoon, but the big day will be the 22nd when we meet with the radiologists and the team of oncologists.

Adam has been doing fairly well, his counts are up, which is a good thing, however it is causing him a little back pain. This is a normal reaction to the Neupogen, but other than that he seems to be doing well. Adam is such a quiet subdued personality it it sometimes hard for us to determine just how he is doing. But, I am sure if he was not doing well, he would let us know.

Well we are on our way to the all day extravaganza, we will let you know our results as soon as we know, keep your fingers crossed!

Rain & Ice and Everything is Not Nice

The day started with an nice strong Midwestern ice storm. So going to work would be treacherous to say the least, however the weather reporters stated that if we waited until after rush hour, it would warm and the ice would turn to rain.

Sounded good to me, so I called into work letting them know that I was going to be late. Adam had chemo session at the clinic, scheduled for 10:30, so being concerned about the road conditions, I called his mother and she said seeing how it was later she would go out early and try to avoid the weather. So about the time I was about to leave for work I received a call from Adam's mother.

Adam was being very...aggressive would be an appropriate word for what he was being. He was hitting the dashboard, throwing food and using language 'unbecoming" of a teenage boy to his mother. So I decided to call out of work all together and investigate the situation.

Once we arrived at the hospital for his chemo session he was back to "normal" and we discussed the episode with his nurse practitioner, Lisa. She advised that it was very likely that he was experiencing "roid rage" due to the excessive amounts of steroids he had to take while on chemo to boost his metabolism and immunity. We knew it had to be something as this was not Adam's usual behaviour at all. So discussions proceeded regarding this issue and we were advised that he would need a psychological evaluation and that anti-depressants would probably be prescribed to counteract the effects of the steroids.

The day continued well, Adam had his chemo and tolerated it very well. We all left in one piece, and somewhat happier upon our departure than upon our arrival. It is inevitable that there are going to be good days and then there will be bad days, but if we can prevent the bad days then we should do what is needed to make those bad days as few as possible, for all of our sanity!

Getting down to business........

Adam came home from his dad's yesterday. It was really good to see him and know that he is feeling so good. The prednisone is doing the trick when it comes to his appetite! He is like a bottomless pit! But, I am not complaining. The more that he eats, the better because it is weight that he needs to keep up with the chemo.

We go McCullough today to get labs drawn. I'm praying that his counts are good enough to stop the GCSF. I hate giving him shots! I can do everything else that we have to do but it is so hard for me to give him a shot. It just hurts me in my heart to think that I have to do it but we do it because it will help him.

We go to clinic tomorrow (Tuesday) for day 8 chemo. Vincristine and Bleo (yuck!). Adam did really well last time and I'm praying that tomorrow goes as well. If the weather isn't bad, Adam will get to drive to the hospital but not drive back. The doctors will prescribe some Zofran or Ativan and he can't drive after he takes them.

This will be the first port access since we came home from the hospital. Adam seems to be doing great with the port. He is just complaining a little that it feels like a sore muscle. Hopefully, the soreness will wear off soon.

Now about getting back to business....... Adam has to get going on his schoolwork. We have a school meeting scheduled for the 9th and he needs to get his work finished. The last bit of math homework we haven't had a chance to even look at because the teacher didn't come in to our room this last hospital trip. But, I'm sure that he will get it done even if I have to prod him a little bit!

Home Again

Well not exactly, but home with Dad. Adam was dismissed from the hospital today after a battle with his PICC line. They (they being the nurses) normally just pull these out with no problem, however Adam's vein spasmed and caused it to clamp down on the catheter, which in turn caused the line to get stuck! OUCH!

So after several hours of warm compresses to allow the vein to expand the picc line was fully removed and discharge from the hospital was inevitable.

The second session of chemo went rather well. Very little if no nausea and he seems to tolerate it very well. Expect for draining him of energy, he is doing very well. The port site looks great. As his nurse said it was a "text book" procedure. He seems to also be tolerating it very well as well. Very little pain is associated with it. He says it feels as though his muscles are sore like he has been working out.

He actually has gained a little weight, and has even grown a little.

Adam started the New Year off here at dads and will go home on Sunday.