…better days
A place to collect my thoughts and update everyone about Sky.Dr. visit
We had our regular oncology appointment today and cycle 5 starts tomorrow. The appt went ok. He has gained 5 pounds since his last visit. That is great. It is good to see him looking pretty healthy – and he can do 5 push ups!!! Sky asked her today what exactly will it be that does him in, expecting to hear that it would be his liver, but that wasn’t what she told us. She said it will probably be the cancer blocking his intestines again and his body not functioning properly. That was a bit of a bummer since he had such a miserable time going through that in July. He was really hoping to never see that again. She told him again he should travel and do stuff he wants as long as it doesn’t interfere with chemo. She is talking about going 9 cycles which is the first we’ve heard of that. Chemo has consistently been spoken of in terms of 6-8 cycles. We will know more after a CT scan in Nov. But that will probably put off alternative plans – such as MD Anderson – for a while longer. I guess if the tumors are still shrinking then we can’t be too discouraged right?
He is still holding is own quite well right now. He went to Disneyland yesterday. He has been back and forth to Northern Ca. a couple times this month. The golf tournament did not go over well but I’m sure it was nice for him to see everyone who turned out. He continues to go golfing. Trevor punched him in the arm so it is bruised up at this time but as soon as it heals he will be back on the course. Brothers - I’m glad I’m not a boy.
Sky also has a new girlfriend. Her name is Azza. She is really nice. She has a young daughter name Yasmine – who couldn’t be any cuter. She is the friendliest child I have ever met. The first time she saw me she came up and sat in my lap and let me hold her as though we had been friends forever. Personality to spare. I think Azza is good for Sky. She helps him enjoy life and distracts him from the darker side of reality. The seem to get along great and it’s obvious she deeply cares about him.
Well the fun starts all over tomorrow. I’m sure it will go fine. Pray it does it’s job and we will see it’s results next month. Thank you all for staying tuned.
So it wasn’t strep after all. He had an abscess in his throat. It had swollen so bad his left tonsil was pushing it’s way over to visit the right side. It was becoming a struggle for him to swallow or talk (which by some peoples standards may not be a bad thing – the talking part that is…:)). So we went to see his doctor and she said it came back negative for strep and diagnosed it as an abscess. She then proceeded to pump him full of steroids and antibiotics via a shot. They got him in the bum, right arm and left arm. As we were waiting in the pharmacy for a prescription a nurse came in and hunted him down in there to give him his last shot. He escaped before she could give them all to him. The first one was ok but the last two hurt him bad and made it difficult to sit and use one arm for a while.
His doctor scheduled an appointment for Sky to get that abscess drained the next day with an ENT. That night, before his appointment had a chance to come, the abscess popped on its own. Sky said it was the worse thing he tasted or smelled. However, he had instant relief. No need for the clinical draining, his body did it for him.
That next day we were supposed to begin the next cycle of Chemo but since he developed that abscess it was postponed until after the wedding this weekend. We will be driving home Sunday from Sacramento, then up and at chemo by 8 the next morning.
Although chemo was cancelled we still went to his appointment with Dr. Kim. She gave us the results of the CT scan. All-in-all I considered it good news. It could have definitely been worse. She determined that the overall shrinkage is probably less than 25% but there are areas where the tumor shrunk as much as 50%. There were also other tumors that did not shrink at all. Those areas included the liver, spleen and bones. However, she did make an interesting comment. She said that they could not conclusively determine those spots were cancer since they did not biopsy those particular areas. They still think it is though. And she did confirm that there isn’t a chance for a cure – at least medically, from her stand point. But nobody knows, and she says that too. We are still counting on a miracle.
One bit of great news is that the fluid in his left lung is almost completely gone. They said that it is probably due to the chemo!!! It is doing some good stuff in there. I think any shrinkage is good news and moving in a positive direction.
Well the fingers of slumber are slowly tightening their grip on me. I am tired and desperately need to go to bed. Good night and keep praying.
Good news and bad news…and waiting for more news. The good news is that Sky went camping over the weekend with Zion and just about everyone else in the family. It was Gabe (my cousin) and Amanda’s (his fiance) bachelor/ette party. I thought that was a cute idea. We didn’t go because Ethan just started school on Thursday and I couldn’t take him out the second day. They are getting married next weekend. They moved the wedding date up to make sure Sky felt well enough to come and enjoy it.
Ironically enough (and here comes the bad news) Sky just got home and he is really sick. He has a slight fever and his throat is very swollen. It looks as though he has strep. He went in for a culture on Friday but has not yet received the results. They did go ahead and give him a prescription for Penicillin anyway, however he has gotten far worse since Friday, not better. That is concerning since he just finished a prescription of neupogen – which is meant to boost his white blood cell count and prevent illness/infection – and he took 3 days worth of antibiotics. We will be contacting the doctor tomorrow. I hope they don’t admit him over a sore throat but I know anything is possible. I hope he feels better in time to go to the wedding. I’m sure he will I am just nervous.
We haven’t heard any news about his last CT scan yet. I think she was just waiting to talk to us on Tuesday when he is scheduled to go in for his next cycle of Chemo. I’m not sure that is happening now that he is sick and I am extremely anxious to see how effective it has been. I’m certain that when we do get the results they will be positive and she will tell us it the tumors have noticeably shrunk.
I’m tired and am going to say good night for now. I’ll let you know what happens over the course of the next few days. Keep praying. I believe it is working.
I’m back
Wow it’s been over a month since my last post. I’m sure it seemed I fell off the face of the earth for a while, huh? I found comfort in the distance and it was easy to distract myself with boring mundane dealings of day-to-day life. Mainly it was made possible because things have settled down quite a bit and have begun to return to “normal” as much as it can. Although life remains busy the terrifying components have subsided. I have backed off a bit – especially since Keyonne has moved back in. I want to give them room to develop their life together and find a routine for their family. I do go and check on him most days and take him to doctors appointment.
Chemo is seemingly working it’s magic. He has lost inches off his belly which is the great indicator that his tumor may be shrinking. We go in for a CT scan next week to get a definitive view of what is actually going on inside that body of his. As an added bonus his response to chemo physically is improving. Each cycle has provided him a little more leniency and allowed him to do more everyday activities – such as golf. He golfs any day he can stand it.
We have had some hiccups. The manufacturer discontinued the pill form of his chemo drug Etoposide. Now it will be given to him in IV form along with his other chemo meds. They also added a bone strengthener for the cancer that has snuck into his bones. The hope is it will support is bones enough to prevent them from getting weak and deteriorating. The bigger objective is that the chemo will prevent it from spreading. Together they will assist him in maintaining a healthy quality of life.
This last cycle was his first time getting the Etoposide injected. It’s done over 3 days. We only made it to 2 of those days because as we were getting ready to leave for the third appointment they called and said he has almost 30% too much chemo in his system already. Woops. I don’t know who made that mistake but it is a bit disconcerting to say the least. Actually, his side effects are not too bad considering. His white blood cell count in quite low but all-in-all he is doing well. We were worried because receiving drugs IV is often stronger than pills and then getting too much could have been hard on him. But so far things are going ok. Cross your fingers.
Pray that we get good news from this next CT scan coming up. Thanks for being patient with me. I’ll try harder to keep you all updated in the near future.
Home again
As my mother commented WE ARE HOME. Sky couldn’t have been happier to get the news last night that they were going to release him. It was great to sleep in a real bed again! I feel the best news was that Sky does not have an obstruction in his intestines. They are slower than molasses but it is not caused from cancer inside his colon. Amen.
I don’t think he realized how much his excitement about breaking free was going to take a toll later. Although many of his eager friends were here to greet him and share in the joy he was quite tired and not really up for visitors. However, since then he has done very well. The vomit bug has only struck him a couple times. He even went 9 hours thoughout the night without getting sick or taking pain meds. His tumor has not shrunk any but that was to be expected. We were not anticipating seeing any real results for another 4 weeks anyway. So far, life is getting back on track as much as it can right now. Zion stayed the night last night. It was the first time they have seen each other since the 4th. He has kept down everythng he ate today and went for a walk around the block. Our prayers are working. We have a long way to go but today things are looking good.
another day
Sorry I have not written in a couple days. I was on sabaticle. I had to go to Nevada to get Ethan so he would have a chance to spend some time with Sky. Although the break was a relief it was not restful. We spent the night in Utah with Brian’s niece Ashlee and her husband Drew. Their company was a much needed blessing. Ashlee was working on earning number one cousin position in Ethan’s eyes. She did a good job in less than one day. Back to real life.
We are still here. Sky is growing increasingly frustrated. Some days, some moments are good, optimistic even. His oncologist said she has noticed shrinkage in his tumor. I’m sure she knows what she is talking about but I refrain from getting excited. I am less partial to the up and down roller coaster of emotion that comes as a side effect of cancer. I truly hope this is so.
There is a reason he is still in the hospital. He is unable to keep food down. I think they may be doing testing today to see what the hold up is the digesting food department. The doctor is here right now so I’ll update again later. Pray for good things.
last night
7/17-We are currently still in the hospital. That’s ok, things are going well. Progression is still forging on. He was able to pass some hard stool last night. Elation for all of us. He is getting sick but the doctors recommended a clear food diet anyway. She even stated that if Sky could keep it down then he may be able to have a solid meal by lunchtime. He is currently on a nutrition IV. But that is really helping to get some much needed nourishment in his system.
There is a surgeon who is keeping an eye on things also came in already this morning. He is going to check on the pictures they took yesterday and see what’s going on with Sky from the inside. Don’t worry they are not planning on doing surgery. He’s just the doc who is making sure there is no serious blockage and things can continue on the way we are going.
7/18 Sorry I did not finish my post yesterday. One thing leads into another and the day slips away. A lot has happened and a lot of the same still remains. He is going to the bathroom rather well now. Things are really starting to move through. I have never been so exstatic to hear someone pass gas and poop and much as I have these past couple days.
The days are long and the nights are longer. He was moved to the oncology ward yesterday evening. Although the room is MUCH smaller and far colder I think he is much better off. He has nurses who are on top of it and understand his needs. It makes a world of difference. Plus, he has a real bathroom with a shower and a sink. We are living in luxury now. I wish I could have had that about 2 days earlier. I went home for a couple hours last night while he had visitors and got a shower and some fresh clothes-much to the appreciation of the staff and company.
He won’t be released until he is able to keep foods down. He is still throwing up quite a bit. There was a lot of pressure in there and it is all decided to vacate the premises at one time. He is feeling a lot better though. His latest blood test showed that his white blood cell count has begun to drop-an expected result of his chemo. So we just need to be extra cautious around him from now on. All in all things are looking good and we are hoping to be able to go home either later today or tomorrow.
success
Here’s the (very) short story. Things are moving once again. yeah! We are still at the hospital and he is vomiting a bit but he says the pressure is decreasing. He is sleeping quite a lot considering he is in the hospital. His nurse is doing fine and he getting fluids through an IV. I will take the victories where I can. Just thought you all might want to know how he is doing. Thanks to all those who are supporting everything Sky is going through. It does not go unnoticed. Don’t forget to keep praying.
Also, we just spoke with the oncologist and he does not have lung cancer. She clarified that he has cancer in the lining of his lungs. Apparently there is a difference. I guess it is all part of the same kind of cancer. It is a cancer that lives on the lining of his organs. I don’t know whether to be relieved by that or not. It’s not worse news anyway.
Ok that’s it for now. I’ll catch you up later.
???
Yesterday was a long day, as was the night. Something tells me this day won’t be much better. I’m functioning on very little sleep so if this blog entry is not coherent please forgive me. Although, I have become awakened to the benefits of coffee since this whole process began. Morphine and coffee have rapidly become my two best friends, addictions really – and I’m not even the one on morphine!
So after his blood test yesterday we convinced him (with the doctors advice) that he should go to the hospital to get an evaluation of his bowel situation. It had been 11 days for God’s sake. After 7 hours in the ER they decided to admit him and see if they could get things moving. We are still here at 10 o’clock the next morning, no progress has been made as of yet. Needless to say the entire event has been an effort in frustration. I stayed the night with him in the hospital. He was quite irritated that the respective hospital people kept coming in at night to bother him. I don’t think he understands hospitals function in another dimension. He insisted every time someone came in that they come back later and let him sleep. That’s understandable but it prolongs this experience.
There was no communication between the ER and the nurse who would be caring for him in a room. They are instructed to take extra precautions because he is a chemo patient. They need to restrict any possible exposure to germs. This was not done. His nurse has no idea he was a cancer patient and was indicating he may get a roommate. We quickly spoke up and said there is no way he can could share a room with someone so they moved him into a private room. A small consolation. His nurse was not on top of his chemo meds or his morphine. I had to get up all though the night and insist she give him his appropriate medication. He was in pain last night more often than was necessary. To boot she was asking me about his chemo meds, the schedule and the dosage amount. Sorry Bridget, I don’t want to offend you – but shouldn’t she be anticipating his needs as opposed to me having to tell her every time? Not once did she come and check on him or give him is medication without my prompting. That was very discouraging.
Today’s nurse is better. She has been in to check on him frequently and he now has a sign on his door informing folks to take “chemotherapy precautions”.
The doctor ordered a nasogastric tube but that was a disaster. Two separate sets of nurses tried to insert the tube but to no avail. It ended up making his nose bleed and curling up in the back of his throat, causing him to cough up blood for a minute. Not the intended effect. For those of you unfamiliar with a nasogastric tube it is a tube that gets inserted through the nose into his stomach to extricate the contents in order to relieve his pressure. A gastro doctor will be picking him up in a few minutes to run some tests. I hope we have more success with that then we have had so far.
I will update after we know more. Thanks for tuning in. Pray that Sky walks out of here today with a fresh perspective and an empty belly.
Not once
We have yet to see a day, a phone call, an appointment that brings even a glimmer of good news. Ok well the first few days following the initiation of chemo treatment spirits were high. Time wears on, reality sets back in and the delusional comfort accompanied with morphine starts to fade. Even the mighty high of morphine can’t trump the strength of chemo and the perils of an evil named cancer. Enter a phone call from the lung specialist, Dr. Tom. It is confirmed that our suspicions were grimly correct. He does have cancer in his lungs. He doesn’t seemed to be affected by the news. On one hand I can agree – it probably doesn’t really change anything. On the other, it feels like the mountain of heartache unmercifully keeps growing. How many more compounding factors can there be? I must be living in an alternate universe, in a dream. In this horrible nightmare I call my life I still hope that Friday carries with it the news that his tumor is responding to treatment. Keep praying. That is all I can ask.
Oh more fun news. Sky’s dryer broke yesterday and his washer isn’t too far behind I fear. Since he is so sick and his immune system is so low we really need to stay on top of festering germs. My friend Ana is asking local businesses to donate a new set for him. Sears is the only one who has even attempted to seem interested. We are waiting to hear back from them. If that falls through and someone knows of how to get a decent washer and dryer either donated or for pretty cheap, please let me know. We have a tax ID number connected to his foundation (for more info on that see www.skyjackson.blogspot.com – his blog).
But wait, it’s not over. His microwave broke today and his oven (which I think was just fixed) expels a smoky, burnt smell that makes breathing difficult for Sky. So we don’t have any way of cooking either! When it rains it pours. Crystal will be bringing down her microwave next Monday. We will be fine til then. Luckily Sky only eats things such as Ensures, P,B &J’s, and yogurts. Irony is a strange bird.
It will all come together. I need to give it time. Thank you all.
