Tuesday, September 28, 2010

Going Home for Good!

At long last we get to go home. We pretty much begged the doctors. They finally decided it was ok to go as long as we were really careful and went home on IV antibiotics. We were so excited. The staff came in a sang us a farewell song. All of the people you see there (and many more) have taken care of us at one time or another. All of the staff have become a second family to us. They were all so excited for us it brought tears to my eyes. In fact I was teary the whole day. Randomly wiping my eyes at the thought of being done. We did it!


This is the cancer bell. It is center to all of the "pods" that the rooms are on. We would walk by it time and time again waiting for our turn to ring the bell! In case you can't read it it says, "Ring this bell, three times real well, its toll to clearly say, my treatments done, this course is run, now I am on my way!" The ringing signifies hope to all the other patients. Its tolling is loud enough to be heard in any room. When someone rings the bell you stick your head out the door and cheer for someone that has won their fight! It is a clear statement that you are joining the ranks of cancer survivors and will not be coming back to these halls! Critter wasn't sure what to do but I had to wipe tears away as I filmed this.

There are some statistics that terrified me. Because I was afraid of these numbers I rarely spoke of them even to Jason. Current cure rates for AML pediatric patients are 50%. Half. There was a 50% chance they couldn't cure this. There is a 6% mortality rate while in treatment. That means that 6% of AML patients die during treatment. The drugs are really tough on them and sometimes their bodies can't handle it. Usually they die from an infection that doctors couldn't control. When Critter was really sick during his fourth round this statistic wouldn't leave me alone. If we survive treatment we get to add 6%! Ringing this bell meant that we have a better chance of keeping Critter forever! It meant an extra 6%! When your trying to pass the test of life 6% is a huge number! With Critter's favorable chromosomes the latest studies would give him a 74% chance. So with chromosomes and making it through treatment the docs have given us an 80% of a cure!

With our 80% we hit the halls of the hospital for the last time! Critter has gotten used to his mask and will wear it sometimes. Once his counts recover completely we can ditch it for good! For the next few weeks we will have labs drawn and they will monitor how he is doing. Once his labs recover completely (they say 4-6 weeks) they will pull his central line. It will be an outpatient surgery to pull his line, but they say it is really minor. Once his line is healed he will be a normal kid! He can go to church (just in time for nursery!), he can take a bath, he can wrestle with his brothers! We will be going back every month for the next 2 years for labs and clinic visits just to make sure. Usually when they relapse it is in the first 2 years. After 2 years the chance of a relapse is really low. If he goes five years without relapsing he is considered cured! Most Oncologists will see their patients yearly until they are 18! Looks like we have made some lifetime friends!

On the way home Jason and I just kept saying "I can't believe it. We made it. We're done!" We have taken it day by day for so long not being able to face what might be in the future, now that we are done we can't believe it! When we arrived home I started crying again. Our wonderful friends had put up a banner welcoming Critter home! On the back of every card were notes from different families with words of love and encouragement! We would have never made it without the support from so many people! I know I have said that so many times on this blog but it is so true! I don't know what I would have done. I was always so confident that my other kids were happy and well cared for no matter where they were. That was priceless! We have had so many dinners brought in to feed my family. We have had people call and drop by. We had the Critter walk that paid our cancer bills. We have so much love and support I couldn't possibly ask for anything else! Thank you for everything!

We are so excited to get our household back to normal. Critter is adjusting to sleeping in his crib again. Luke and Dallin are adjusting to doing jobs and homework again. And Jason is actually going to do his paper work for work again! I am just so excited to be home and be part of it. I think my only regret would be that I did get a lot of books read at the hospital and I don't get as much time at home. Oh well I really don't need to read that much anyway. I will keep blogging to follow up on his care for a little bit but I'm sure it wont be as frequent. I hope it will be boring at my house. Thank you for joining us in our journey!

Thursday, September 23, 2010

Still Here

Well we are still here. I thought for sure we would be home by this weekend but I am beginning to believe that it probably isn't going to happen. His white blood cell count was 0.1 for a little more than a week. On Sunday it jumped to 0.2. Today it is 0.2. As you can see we are not making any progress! His WBCs are usually at least a whole number before they start talking about letting us go. He has some mouth sores that are pretty bad this time. Usually he gets mouth sores and then his counts come up and they heal. When your counts are low your body cannot heal itself. So his mouth sores are not healing this time and I think they are bothering him. He is also really bored. When Jason comes up this weekend I am going to have him bring some new toys. With the light at the end of the tunnel it is torcher to wait and wait for the labs to get better. I feel like screaming! I honestly thought we would be out sometime this week and now I am arranging another week of no mom at home.

He is happy most of the time even when he is being a non-compliant patient. When the docs come to see him they use the otoscope (the little light on the wall that docs will use to look in ears or eyes). Critter has figured out how to take the top off. A doc will say open your mouth and he will take the top off the otoscope and hand it to them. They aren't sure what to do its kinda funny. He is also refusing vital signs. They put the blood pressure cuff on his leg and he shakes his leg until they take it off. We are bribing him with candy and he knows it. He will only sit still if you hand him candy first and then only for one set of vital signs. If you didn't get a good reading the first time oh well he is not going to let you try again. Sometimes people look at me like, "do something" but I don't know what I'm supposed to do. I can't pin him down so they can get a blood pressure, he would scream and throw a fit and the blood pressure would be awful. You can tell who has children and understands this fact from those that don't have kids and think you can force everything. It is painfully obvious which staff members have children and which do not. It is also comical at times. One resident asked Critter to tell her where he hurt. I wonder how long she has been doing pediatrics? Anyway dinner tonight was french toast dipped in chocolate pudding! He ate more dinner than usual so I didn't care how messy he got!

Saturday, September 18, 2010

Luke's Touchdown!

Well I get my weekend off from the hospital. I get to enjoy the sun and a little action on the football field. We were so proud of Luke we had to post this! Enjoy!

Friday, September 17, 2010

Not out of the woods yet.

Well just when we thought we were done Critter got sick. Thursday morning he woke up and had his bottle. I told the nurse he felt a little warm. She checked a temperature and it was higher than his normal but not considered a fever yet. He went back to sleep (never a good sign), and soon enough he was brewing a fever. We started all the usual things, blood cultures, chest x-ray, antibiotics etc. He slept most of the day (on me of course). This time we didn't have the big blood pressure drops or anything that serious. This morning he woke up feeling better. He still had a fever but was acting awake and happy.

The cultures showed that he had a form of Strep. This is the type of bacteria that we all have on our skin but because he has no immune system it has entered his blood stream and is making him sick. This is the most common infection that oncology patients get. It is also a very serious infection. The doctor said he is doing really well for having this bug. He is still in danger of dropping his blood pressure or acquiring Strep pneumonia (which he is already showing the beginning signs of). So if we can stay here instead of going to the ICU he will be doing really well.
This might delay our trip home a little. I'm hoping by just a few days but that's the best case scenario. We can go home on antibiotics but he needs to not have a fever for a few days and have a clean chest x-ray. Well it gives us something to work on.

Good points...I showered today...he is acting better...his head is healing...we have been blessed with so much I'm sure a few more days in the hospital is bearable...!

Saturday, September 11, 2010

Done, done,done,done,done!

We are so excited!!!!! We have been admitted for the last time. When we were first admitted back in April round five of chemo seemed ages away, but here we are, Critter was given his last does of chemo on Thursday morning. I can not tell you how happy we are to finally be done with that!!! We are also done with things like eye drops and diaper changes every 2 hours through out the night. We also have stopped his nausea meds too. So now all we do is wait for the counts to drop and then rise and then we go home. The only thing that would make this round the most perfect round ever is if his head wasn't so horrible. Almost every drug they give him from the chemo to the antibiotics makes him very sensitive to the sun. We were home on Monday and did alittle yard work. Critter was outside with us, he had a hat on but would take it off every once in a while. We would see this and put it back on him. He was outside for maybe 45 minutes but in that time with brief moments of sun his head got burnt and blistered. Well blisters pop and ooze and peel and bleed and are nasty on a kid with chemo in him. Needless to say the docs weren't very happy. We now are seen by our usual docs and nurses and now dermatology and the wound team. Despite this he is doing very well and we are counting the days until we are out of here.

Saturday, September 4, 2010

September is Childhood Cancer Awareness Month

September is Childhood cancer awareness month. I stole these facts from a friend's blog. I was never very aware of childhood cancers until this happened to me. Even being in the medical field I shied away from cancer kids. Why do we do that? I now have a love of bald heads. I know these kids are just like any other kids. They just spend a lot of time feeling like crap. I have also heard all of these facts from doctors themselves. Its so scary. Everyone knows about breast cancer but not many people think about kids getting cancer. I NOW think cancer is something everyone should at least know exists. So here you go, my attempt to make people aware of childhood cancers....

Cancer is the #1 cause of death from disease in children ages 1-19 in the U.S.
Every school day, another 46 children are diagnosed with cancer
Only 3% of cancer research money goes toward childhood cancers
In the past 35 years, ONLY ONE new cancer drug has been approved for pediatric use.
Since children can handle much more chemotherapy than can adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The results of these high doses of chemo on children is a higher rate of secondary cancers. (Which means they live the nightmare of cancer more than once.)
Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region

Back and Forth

One more time! Right? Well round five is a little different. We do 2 days of chemo, go home for 5 days, then back for 2 more days of chemo and count recovery. We went in on Tuesday (Aug 31) and since we only went for 2 days I didn't bring the computer. I told Jason to make a post but it didn't happen sorry. Anyway, Tuesday, chemo, by Wednesday morning he was throwing up everywhere. Bigger doses yet again. The good news is that they are giving him a steroid with his chemo to try to prevent the rash. So far it has worked! The skin isn't tearing, no blisters, no burning! He does look a little splotchy but hey we take what we can get.

Tuesday and Wednesday chemo. He got his last dose on Thursday morning and then at 42 hours (which was actually 43 hours because pharmacy was a little slow) He got a chemo shot. A mean chemo shot. They say it stings pretty bad. All I know is Critter was really unhappy for a while. They kept us for another hour to make sure he didn't have any reactions and then sent us home! Now that's the kind of chemo I can handle! I made it home just after the kids got out of school! I was worried that Critter might be sick at home but he has done great! We continued nausea meds until Friday morning and gave him an extra day of steroids just to make sure. On Thursday Critter slept in until 9:30! Its kinda sad. He is more comfortable at the hospital then he is at home. All last week we fought him on going to bed or down for naps but as soon as we were in the hospital he slept great! Friday morning 6:45 am he was up! I guess I should be thankful he is comfortable at the hospital.

The plan is to go back into the hospital on Tuesday and we will probably be there about 3 weeks. The pics are from this week in the hospital and last week we had family pictures. Somewhere in the middle of all this we are finding time to send my brother on a mission. I don't know how I will function without him. He has been the nanny sent from heaven, taking my children at my beck and call. Luke spent half of his farewell behind a couch crying because he is going to miss him so much! Needless to say he is an essential part to our family and I'm already counting the days till he comes home.