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.