Goodbye 2008 - Hello 2009!

Adam slept most of the day yesterday and the biggest part of the day today, he was "snowed" after his surgery yesterday and the chemotherapy. The doctor has him on Ativan and Zofran for nausea and the mixture of the two has him knocked out. Which may be a good thing as the pain from the surgery won't be as bad, but he is not liking the effects. So they changed it somewhat, and now he is more awake and aware of what is going on around him.

Unfortunately he will celebrate the New year in the hospital. But with his strength, his faith and the knowledge from the doctors, New Years Eve 2009 will truly be a celebration as he will celebrate cancer free.

Port-a-Cath

Adam's second session of Chemo started today. This is a four hour process the first day, as several different drugs are put into his body intravenously. Prior to today he had what was called a PICC for this process. A PICC is a catheter implanted into the vein of the arm and into the Superior Vena Cava, which is...well here is a picture:

This morning however, a new catheter was implanted. This one is called a Port-a-Cath. It is a port that is placed just under the skin that has a catheter feed through the superior vena cava directly. This port is closed when not in use, and then is opened or "accessed" when in use. It is much more convenient to the patient. If having a plastic tube running from your chest into you heart cavity which allows chemicals to be pushed through your body is convenient. But this is what is making our son better, so whatever it takes, and however it can be more convenient, both he and his mother and I are all for it.

The actual procedure only takes about 30-40 minutes, but he was put under anesthesia, so we needed to wait for him to "recover" before he was taken back to his room.

The chemo was just started a few minutes ago, so this will be a long night, but Adam is sleeping, which is good.

Christmas 2008

Christmas 2008 will be a Christmas that our family will remember for quite sometime. It was a very blessed and a very good Christmas. Even though our family is in the midst of a health issue, Adam has been diagnosed and is getting treatment and by Christmas 2009 he will be over this hurdle and cancer-free.

Adam seemed to have a good Christmas, over-all he did extremely well. The only thing he complained about, and that really wasn't even complaining was he was getting fatigued pretty quickly.

He spent Christmas morning, as is the tradition, at home with his mother, brothers and stepfather. Then he traveled south to Cleves, Ohio at his uncle and his aunt (my brother Gary and his wife Angie) home for our family Christmas. He ate VERY good and was able to enjoy the family and the fun. Then it was off with Dad. Dan and I always celebrate with his entire family on Christmas night. It is held at his mother's and there is usually a good 20-30 people that make their way in and out. Adam stayed in a room where not as many people ventured as to not expose himself to any possible viruses, etc. but still had a good time watching the after dinner game -time, where we all played Catch Phrase.

Adam and his brother Jordan remained with Dan and I and will go back home Saturday.

Yes, Christmas was a good one, a memorable one and a very blessed one.

Where Oh Where ...

What has happened to his hair? Well it started to fall out so he decided before it started to get any worse he would just shave it off. It really does not look bad, it looks kind of cool. I like it on him. His step-father also shaved his. So the question is...Is Dad going to shave his? Well, I will probably start with a buzz cut and go from there...

Despite the loss of hair, Adam seems to be doing very well. His counts are going back up, and he is eating and not getting nauseous, but then the second round of chemo has not started yet. That will start sometime on the 30th of Dec., after they put in his port. The port is much like the picc line, except it is under the skin, and allows him more freedom. It is also easier on the veins when the chemo is being given. Then sometime after the port is surgically attached they will begin the next session of chemo, and he will be hospitalized for about 3-4 days for that. At least he will be home for Christmas!

With Dad at Clinic

Today we went to clinic. Adam has to visit the Hematology/Oncology clinic once a week, at least for now. The clinic is to go over his progress with the doctor's and nurses , due testing if needed, take labs if necessary and any collection of things that may be required for his treatment prior and after chemo.

This week was my first clinic with Adam. He and his mother went last week and I popped in for a little while during my lunch. Today, we spent the entire day together running from one area of the hospital to the other. A Bone scan was scheduled. This was to determine and to make sure the cancer has not metastasized into the bone. They injected some nuclear fluid into Adam and then had to wait 90 minutes and then would scan his entire body. So while we waited we had a chest x-ray, and I also was taught how to "flush" his picc line. We also had lunch.

Then the bone scan was completed which took about an hour. Then back up to clinic for weigh in, height check and a visit with the Doctor.

The preliminary results of the bone scan were positive. No cancer in the bone! This is great news. We expected this, but it is always good to have it confirmed. The other news is that the chest x-ray showed "remarkable" (the doctor's words) shrinking in the diseased areas of the neck, clavicle and sternum. Of course we were unable to tell the masses in lungs, but tests will be performed soon to give us an idea of how those are being wiped out.

This was all good news, but unfortunately Adam's blood counts were way down. This is not good, as this makes him vulnerable to any type of virus or infection that may be flying around in the air. Which during this time of year, there are all kinds of those bugs around. So we must be very careful not to expose him to any type of infection.

Over-all clinic was a good experience and we received very favorable news. The next clinic will be on the 22nd, and then he will be admitted on Dec. 30th for his second round of chemo.

Not Always About Adam

Since Adam's diagnosis a lot of attention has been given to him. That is natural for all parents, when one of their children is sick they tend to shower them with attention. Mainly to make sure they are doing okay, being worried and any number of things that go through a parents mind.

Unfortunately if there are other children in the family, they tend to get "left out in the cold". When a child is sick that can last for the entire time they are sick, so with Adam having Hodgkin's, a lot of attention will be showered upon him. That leaves me with the reason for this posting. Adam's brother Jordan.

Even though Jordan is 18, he still lives at home and he too needs the attention, so this post is about him. He made the comment that there were no posts about him, so today it's about Jordan.

Jordan and Adam are very close in age, as well as close to one another. They look out for each other and they also fight with one another as brothers do, but NEVER say anything bad about the other one or you will see just how close they are. For many years when you saw Adam, you saw Jordan. Now that they are older that is not always the case, but you can guarantee if Adam needs his brother, Jordan will be there and vice versa.

So this has been very hard on Jordan. But he has still been there and supporting Adam every step of the way, just as a brother should, and just as a BIG brother should. So Jordan, thanks! You know that mom and I love you and you know that Adam does too, even though he never tells you that. Hang in there, and know that we still think about you too and we still worry about you too. This will all soon be over and I am sure that during this time you will get all the attention you need. If not let us know...

Life in the last few days

We came home late Tuesday night on the 9th of December. We had to have all of our ducks in a row to get ready to come home. Like having all the medicines that Adam would be on for a while and getting the delivery from HomeCare with his supplies. Bill picked up his meds from the pharmacy because we weren't going to get home until late.

The next day we started into our routine. We flush his PICC line and he takes his medicine. Sarah and Alyssa are here staying with us for a few days. She will be heading home tomorrow. Bill and Adam are going to take her home. Adam can ride in the car as long as he uses his mask and takes care not to expose himself to much. The ride was uneventful and they made it home with no trouble.

Friday was clinic day. The nurse coordinator met us in the lobby of the clinic and went over some material with me. Adam got checked out by Dr. Aly and then Dr. Saloman came in and looked him over. He did two meds via his PICC line and got some Ativan for nausea. He took a little nap while we were at clinic. He was pretty bummed out that he couldn't drive home but with the Ativan in his system, I wouldn't chance it.

We stopped by his dad's work and picked up a present from Erin's mom. She sent Adam six pints of Graeters ice cream (chocolate chip cookie dough, his favorite ice cream!) He couldn't wait to start into it and ate half of one container before we got home. He loved it!

Friday night Adam went to visit his friend John. These boys are so close and such good friends. John's mom said that John was so worried about Adam that it was hard for him to get anything done. The boys are six days apart in age so they are very close friends. They just sat in John's room and talked to a couple of their friends.

Saturday, Adam went to a friend's house for a while. I think that he may have overdone it a little because he was really tired when he got back. Fatigue is becoming a factor, I think, and Adam needs to take it a little more slowly until he knows what he is up against.

Sunday was a "yuck" day. Adam was tired from Saturday and wasn't feeling well. He got very nauseated. I gave him the Ativan so that it would help him to not be so sick. I'm hoping that he doesn't have very many of these kind of days. It's not fun for him and honestly, just makes me worry about him more.

I Just Want To Go Home (Day 14)

I think I heard those words about 30 times or more tonight. I am sure his mother heard them even more. The hospital made the mistake of telling Adam that he could go home today. However, they didn't realize when they tell a 15 year old who has been in the hospital for 14 days that he can go home, is that he expects to go home NOW.

Adam did go home, but after a very trying and impatient wait. It seems as though he is finally understanding the threat of his disease. As most kids, Adam is no different in believing that they are invincible and indestructible. Today I think he realized just how real this thing called cancer is. And how fragile we all are. He had sort of a meltdown today, and as he did, so did we all. Our nerves were raw, and our emotions have been ripped apart for two weeks and I think it all came to a head for all of us.

Unfortunately, this is something that we should not have experienced together. It would have been less painful and nerve exposing if we could have all experienced this at differant times.

But then it is not about us, it is about Adam and that is where the focus needs to remain, and from this point on it will be. Because he is too important, as any child would be in his situation.

To compound upon the emotional effects, Adam also is having to deal with the chemical effects. Not just of the chemotherapy but of the steroids that he HAS to take to strengthen his immunity. I know from my own experience with steroids, that you are constantly on edge and it feels as though you are going to crawl out of your skin. I was only on 5 milligrams, he is on 35 mil. twice a day. I am sure this is taking it's toll on him and is causing him to act out when otherwise he would not. That is not even taking into account; pain meds, anti nausea meds and the actual chemo. No wonder he is frazzled. He is allowed a meltdown once and a while. Actually I am surprised that it has taken him this long. But then he is a very strong-willed young man.

But finally we made it home. Adam's mom was able to sit down for a few minutes in her own living room, and Adam was finally able to relax and not deal with the confines of the hospital. Like he said when we got to the car. "Fresh air never felt so good Dad."

The first treatment is over. Several are still ahead with more curves and detours I am sure, but one thing is for certain, the road my be treacherous, but He will make it through this. The journey has just begun but he has a tremendous amount of support, love, faith and strength to help him through it.

What a Difference a Day Makes

Today is the third and last day of the first round of chemo. Unfortunately it did not go as well as last night. Adam became nauseous around 1:00 and began to get sick. They gave him the anti-nausea medication, however it put him out. He slept from 3:00 p.m. to 8:00 p.m. He did sleep through his entire chemo regimen though and did not get sick, as he was asleep

When he did awake, he was still somewhat nauseous and was unable to eat anything. Finally he had to take another type of anti-nausea medicine which made him feel better and he was able to eat. Then it was time to take his prednisone, which is what caused the nausea earlier. He took each pill then chased it with ice cold Mt. Dew and then a tic tac. This worked! However when I left at around 11:00 he was complaining of nausea again. Let's hope he makes it through the night. Because if not, the Dr. said he would not be going home tomorrow if that was the case.

The steriods are already starting to make him swell a little, and he is also getting a ton of fluids being pumped into him, so his face is beginning to fill out. Also there was some hair on his pillow tonight, which means he will probably lose his hair. He didn't seem too upset about it though, he just said he may as well get out the razor and shave it off.

Hopefully he will make it thorugh the night without any other complications and will be on his way home tomorrow evening. The first journey of his battle is almost completed. Now we have about 12 months of treatment still ahead of us.

Second Day of Chemo

All in all the second day of chemo went very well. Adam is involved in a clinical study with his chemo, it is Response Based Chemotherapy and Radiation Therapy for children with newly diagnosed Hodgkin Disease. What this means is that Adam, along with about 85-120 other children in the Cincinnati area will take part in the study with 1700 others across the country. The therapy is based upon the response, so if Adam responds quickly a certain protocol will be followed and if he responds slower, then a different protocol will be followed. Ultimately the same results should be the final result and that is for the patient to be cancer-free, hopefully with using little or no radiation.

Adam is taking several drugs into his system. Most of them are intravenous, however the steroids are by mouth. Along with the chemo and the steroids, he also is on anti-nausea medicine. Tonight he did become a little nauseous and was given the anti-nausea med. This made him really loopy. Most people that know Adam, know he is kind of quiet and laid back. With this drug he was completely opposite. We are not complaining though, as he had no nausea.

One of the chemotherapy drugs is a bright red. It takes about 45 minutes to go through the IV and into Adam's system. As you know everything that goes in, must come out, right? Well the remnants of this drug comes out in his urine. Which made his urine a hot pink color. He thought this was hilarious and had his sister take a picture of it (as he has to keep his urine for intake-outtake purposes) and put it on the blog. So here it is....yes, Adam's chemo induced urine. I am sure you are all excited!

Hey, I am happy that he is looking at this in an upbeat manner. I think this is what is going to get him through it.

I left around 11p.m. and Adam and Sarah were still awake and enjoying one anothers company. Hopefully his nausea will continue to not be a problem and he can get through this first batch of chemo with little or no side effects.

Day 11 - First Chemotherapy

Well, we started the day as we normally do with vitals. Thank God that everything there is going well. Today is the Jones family Christmas and we have had a couple of calls from everyone there. Glen and Lois are supposed to stop by on their way back home. Bill is here with us today. Mike is at home because he is running a low-grade temp. He's on antibiotics and should be back here tomorrow.

All in all, it's been a pretty quiet day. Adam has watched movies and we are watching the 2nd season of Friends. Glen, Lois, and Lucille came and brought some food from the get-together. While they were here, Adam started getting the chemo. Overall, he did really well. Some of the medicines run through pretty quickly while others take longer (more than an hour because of the size of the catheter that they have to run through.) He's taking a good size amount of Prednisone and he has to do a mouth swish and mouth wash. He had been doing really well, not nauseated until he took the prednisone. He said that it tasted bad. He did his mouth swish then and got sick. Just once. The nurse brought in some phenergan (sp) and gave it to him via his IV. He then went off to sleep.

I just hope for Adam's sake that this runs smoothly. He is getting grumpy but with everything that he's gone through he has just accepted it and gone on. The prednisone can cause mood swings and crankiness. I've asked him what I can do to help him. All I can do is be here when he wants me and do the things that he needs. He needs all the support that he can get from all of us.

Day 10 and Some Good News!

We received some good news today. The doctors are not going to be removing the diseased lung, or a biopsy at this time. They are going to start chemotherapy on Saturday. They feel that after two rounds of chemo and possibly a round of radiation, the tumor in the lung should decrease in size. The smaller nodules should also decrease. Once the two rounds of chemo are completed they will then do more tests to determine the results the chemo had, and at that time if they feel the treatments are not working they will then take more more invasive option of surgical removal.

This is good news to Adam, as he was NOT looking forward to surgery. I do not think the doctors wanted to really do surgery either as they need to keep him strong for the chemo. So tomorrow the first treatment of chemotherapy will begin. The protocol will be three days of chemo, then possibly home on the fourth day. Return for tests on the eighth day and then the second round of chemo will take place 21 days after the last. So according to my calendar, the 2nd round of chemo should take place around the 30th or 31st of December. So it looks like Christmas will be spared any trips to the hospital!

I have been sick for a couple days myself, a really bad cold and sore throat, so I did not go to the hospital today, but I will be there tomorrow, with a mask on, as I know he is going to need us there.

You can give you well wishes via leaving a comment on any blog post or you can email Adam directly at atw1993@gmail.com I know he would appreciate your comments.

More Tests

Today is day 9 in the quest for getting treatment for Adam. Yesterday on day 8 a PICC line was inserted into a vein in his arm. His dad and I were with him while the procedure was done. Adam said that it didn't hurt. His flu shot hurt worse!

I have talked to the oncologist today and the surgeon. It looks like the lung procedure will be done on Monday. I have to be honest that I hope that the less invasive procedure will be enough to put this question about his lung to rest.

We were able to go on a four hour leave today. We went home and Adam was able to see his friends. It was good to see him smiling. They are good kids and are very concerned about Adam. Living an hour away from the hospital, he didn't have a real extended time to be with them and then we had to drive the hour back. We are hoping for a weekend pass before the biopsy on Monday.

I have heard from several different people, all extending help and support. It's good to have that with all that we are facing right now. I know that Adam misses his regular routine. I keep hoping that things will calm down soon.

A Week Makes One Weak

Today has been a week since we have been in the hospital. I say we, when I should say Adam, as both myself and his mother have went home and slept in our own bed. He on the other hand has been here for the entire week, take eight hours of pass time over the Thanksgiving holiday.

In one week his life has changed, forever. In one week our lives have changed forever. Everyone that knows Adam has been affected by this. From his mother and I to the class mates that see him in the hallways everyday. This reality became even more real to us today as the doctor's began to share some of the side effects of the chemotherapy he would soon be undertaking. One of the side effects is that there is a 25% chance of sterility. This is a long lasting side effect that could changed the course of his life even in the future. So steps are being discussed to avoid that.

It seems like the doctors have an answer to everything. Well almost everything. Right now they do not know how they are going to go in to his body and obtain a piece of the lung for biopsy and testing. The surgeons and the pulmonary specialist are weighing the complications and the pros and cons of the different options. In the meantime, Adam has become increasingly agitated and aggravated. Which is to be expected. Also his mother and I are becoming somewhat agitated as well.

But even in this time of transition in Adam's life, our lives must go on. In a few days I will need to return to work. DJ is leaving tomorrow for a two week stint in Lima, Ohio for work. Adam's sister went home Sunday, back with her family and Adam's aunts will soon return to their respective homes as well. Some things have changed, and will be changed forever, yet so much remains the same.

In the meantime, we continue to wait. I am sure in a few days the treatment will be underway and we will finally begin to answer those questions that we have had all week, and the uncertainty will become a little easier to deal with.

6 Days...Answers and More Questions

Today Adam had the PET Scan. This test is done by putting radiated glucose into his system intravenously and then take pictures with the CT-Scan. Apparently the cancer feeds off glucose, so it will glow wherever the cancer is located. The scan showed that at least two nodules in his lung was Hodgkin's. Now the next step is to determine how to treat, and in order to determine this they will either have to do a surgical biopsy of the lung, or a bronchioscope to determine how to treat.

We did receive the results from the bone morrow and they came back negative, so no cancer in the bone!!

So now we wait for an answer as to what is next. Once a determination is made as to how to go into and check out the nodules on the lung, then they will decide when and how to start the chemotherapy.

Day 5

And he sleeps...... Sleep is good. Some people say that babies grow while they are sleeping. I pray that it is the same for healing. Adam has always been able to sleep through anything. He had to with three older siblings at home. I have always believed that he was a beautiful child and when he sleeps he has the sweetest expression. Could you tell that I'm just a little bit partial to this special young man?

Things just seem to be going so fast. My mind is in a whirlwind with all the information that we've been given. I am totally amazed with Adam and how he is taking in all of this and not letting this get him out-of-sorts. My new word to describe him is resilient----the ability to bend and not break.

Adam has had quite a bit of company. Of course lots of family have been here. He had four or five of his guy friends come on Friday with their parents. On Saturday, four of the girls from school came to see him. On Sunday he got another four hour pass and went to the movies with Aaron, Dan, Talia, and Jared. He said that he liked the movie (Transporter 3) but I think that he liked getting out of the hospital for a few hours.

Lots of things will be going on the next few days. PET scan is scheduled for Monday. We will know more after that is done and we have the results. As his mom, I have to say that in some ways it will be good to have more answers than questions. I guess my attitude is that if we know exactly what we are going to have to deal with then we can do it.

I love my son and it is hard to see him going through this but we will get through together!

A Journey Begins

The journey really began on February 10, 1993 in Hamilton, Ohio when Adam was born to his parents. The fourth of four children, Adam was the "baby" and still is the baby even though he is almost 16 and is taller than the other three children.

However, this blog tells the story of his current journey from his parents perspective dealing with his recent diagnosis of Hodgkin's Disease.

On Monday, November 24th, Adam had a doctor appointment with his pediatrician, Dr. James Davis. He was going in to check a swollen gland, that seemed to not go down. He had also just had a fainting episode at a friends house and so his mother was concerned, as was I, so a doctor's visit was needed.

Adam's mother and I separated in 1995 and divorced in 1999, we have remained close and are still friends. We have tried to maintain a relationship that would be beneficial for our kids, and so far this has worked very well for both of us. His mother remarried a few years ago, and I have a life partner, we have been together now 8 years.

Adam's mother called and explained to me that after the doctor's appointment, she arrived home to a call from the doctor, wanting to talk to her. The x-rays showed some abnormalities also in his chest area, and his blood work was somewhat questionable, as his white blood count was up, indicative of some kind of infection in his body. His recommendation was to send him to Children's Medical Center for further testing. His diagnosis? He didn't want to alarm us but said it could be anything for a major infection fighting it's way through the body to Hodgkin's Lymphoma.

To make a long story short, further tests were run; CT-scan; Blood Tests, X-rays, biopsy and the doctor's have confirmed that it is Hodgkin's Lymphoma. As to what stage, they believe it is State IV-A, which means the cancer has moved from the initial sight to other sites on the same side of his body. He has a mass on his neck about 6 centimeters long and 2 centimeters wide, another on the center of his chest, roughly the same size, and six nodules on and around his right lung. The numbers are good though, as this type of cancer has an 80-85% success rate.

For Thanksgiving, the doctor's gave him a four hour pass to be with family, and then another Saturday and Sunday. Friday a Bone Morrow test was completed with the results coming on Monday. This will tell us if the disease has moved into the bone marrow (the doctors feel that it has not, due to his blood counts). This will also give us an indicator as to the stage of the disease for sure and this will enable the doctors to determine how to treat the cancer and fight it.

Overall, Adam seems to be taking the new better than his mother and I, and has a very positive outlook, which is important.

This blog will share his journey with you and others through the eyes of his parents, and from him if and when he wishes to post.