Sedation and Thanksgiving

The day before Thanksgiving was Chan's first sedation since his last inpatient 3 months ago.  We woke up that morning and I reminded Channing that he wasn't allowed to eat anything or drink anything except water.  He sat on the couch while his brother and sister and I ate breakfast (I HATE eating in front of him, but there really isn't much of a choice).  When I went into the living room Channing was laying on the floor under his blanket.  I asked him if he was ok, and he just shrugged his shoulders.  I could tell something was bothering him but wasn't sure what.  I talked with him a bit about what they were going to do at the appointment and got everyone into the car. 

After dropping Ema and Jakob off at a friends house I moved Chan into the middle and asked him what was bothering him.  He said he was just tired, but I was worried he was getting sick, or that it was anxiety or a combination.  I asked him if he had owies, and he said no.  I asked him if he was worried about going to the hospital and he said he didn't want to go.  I told him it was going to be ok and that I would hold his hand and he would be just fine. 

It was heartbreaking for me to see my baby have such anxiety.  It makes sense because now that Chan is in Maintenance we go only monthly and its been so long since his last back pokes.  He has been so strong through all of this and I think having to go get back pokes after so long was a reminder that my baby is still very sick and still fighting to keep this terrible disease away.  It was a long quite contemplative drive together to the hospital. 

I have never watched them give Chan back pokes.  I tried to stay the first time when they were doing the biopsy but there were so many people in the room and so many monitors beeping randomly that it was just too much for me.  I also wanted to stay when I was 36 weeks pregnant to watch but the oncologist wouldn't let me because she was afraid it would put me into labor :) 

Chan is given propofol and fentanyl right before the procedure.  The propofol is a short-acting general anesthetic.  The fentanyl is pain reliever and I just read (I am floored!) that it is 100 times more potent then morphine!  I had no idea.  No wonder he never is in any pain afterwards!!  It is calculated based on his weight and given through his port tubes.  This time around right when Chan was given the propofol he sat up and tried to crawl off the table.  Chan was completely out of it and it took all three people in the room to get him to lay back down, and the second he was down he was knocked out. 

I left during the procedure with my infant in tow and headed to the little cafe outside the sedation clinic to get something to eat.  The procedure itself lasts about 5 minutes.  I came back shortly and Chan was asleep.  He typically sleeps for at least an hour before we can even get him to respond to our attempts to wake him.  It's actually a little entertaining for me to lift his hand and have it plop on the table without so much of a flinch from Chan :)  Its also a time that nurse Judy and I talk.  I am pretty sure she knows just about everything there is to know about our family, and she is so sweet and remembers a lot.  Nurse Judy was the nurse that was in the room for diagnosis as well so she has been with us on this journey from the start. 

When Chan woke up one of the first things he said was "Mom, did you hold my hand?".  He remembered I told him that I would hold his hand, and I felt terrible that I forgot!  I said I am holding your hand now, and he was fine with that.  He then wanted his favorite pizza, gatorade, and yogurt.  It was too late to order the food (I felt sooo bad I had forgotten), but nurse Judy (shes amazing!) was able to find some yogurt for Chan to have and he ate two entire bowls full of yogurt!  Then I told him we would buy him his favorite pizza for dinner.  I am pretty sure I would have done/given him anything he asked for at this point. 

This last week Chan has been nauseous on and off and we have had to give his anti-nausea medicine fairly often.  He has also been a lot more tired, and gets more easily upset.  I think that those side-effects are wearing off now.  It really is so hard to see him have to go through all of this, especially since its been so long and feels like a life-time ago that we had all of the hospital stays.  Its a harsh reminder that cancer is still apart of our lives and will be forever. 

Chan's next appointment is 2 days before Christmas.  He will be getting chemo through his port and he will be starting steroids.  It will be an interesting Christmas break for us making lots of burritos and dealing with 'roid rage'.  At least Kindt will be home, and I will not be dealing with it during the day alone. 

I am thankful that for Thanksgiving I had all of my children together laughing, screaming, eating, fighting and playing, and I wouldn't have it any other way!

I hope that everyone had an enjoyable Thanksgiving and were able to reflect on all of the many blessings given by our loving Heavenly Father!

Buzz Lightyear

Buzz Lightyear has been a character that Channing has liked for awhile. Since this has been a very hard year on Channing we decided that for Halloween we were going to all be Toy Story characters.  Channing got to be Buzz, Jakob was Woody, Ema was Jesse, Ellery was the pizza planet alien, and Kindt and I were Mr. and Mrs. Potato Head.  We also got some extended family into the mix and had Squeaker the Penguin, and two different Prospectors :)  It was a lot of fun to dress up as a family.

Meet the 'Round Up Gang' and friends :)



The last month

We have been very busy this last month with this:

 and this:

Channing had two treatments at the beginning of September.  He was on steroids for the first week of school, but I think the second week was the worst when he was detoxing from the steroids.  He was ON ONE the week after he was finished with steroids.  Very cranky, very tired, waking up in the night, etc.  We got through it though and now he is back to his normal crazy self. 

We also went to Madison last week on Thurs for labs and a port flush.  Since he has so much time between treatments they have to make sure his port doesn't get 'clogged' so they flush it.  The appointment lasts like 20 minutes then we are done.  We will go up at the end of October for another port flush and if I'm feeling up to it with all 4 kids, then we might do something fun in Madison.  Since the drive takes about 6 times as long as the appointment. 

The kids are LOVING their baby brother, and are really really good with him.  We had a lot of help the first month after the baby was born, and that was really helpful :) 

Life is going really well, and Channing is doing fantastic!!  Only 2 more years of monthly visits to Madison!!

Relief and Joy

Little Brother was born on August 23rd. 

Channing was sooo excited when he saw baby brother, he looked at him in awe and said over and over "Is that my baby brother??".  He was also excited that someone else was in a hospital bed, and he got to see the nurses do my vitals.  Jakob was excited but a little indifferent.  And Ema just wanted to be in baby brothers face :) 

After baby brother was born I felt this huge burden lifted off of my shoulders.  A new chapter in our lives was opening, and I was so ready for it.  During the last 5 months since Channing's diagnosis, I lived in constant stress.  Some days it was really bad, some days barely noticeable but it was always there at the back of my mind stressing me out and causing me worry.  I was afraid I would have the baby early, I was afraid something was going to be wrong with the baby, I was afraid Channing would be in the hospital when the baby was born.  Some days I would barely do anything for fear of causing myself to go into labor.  All these nagging fears and thoughts at the back of my mind.  Now, I get to just be happy.  I get to just hold my sweet baby boy and not worry about Channing being in the hospital.  Such an amazing feeling of relief and joy.  There is nothing better then knowing we are moving on into a new chapter of life.  Channing is in Maintenance (3rd and final phase of treatment), Jakob and Channing start half day 4K, Ema gets to learn that she is not the baby anymore and we have a new baby to snuggle.  I am not in denial that things will be hard with a new baby, but we are ready for this new adventure and chapter in our lives!!

Last inpatient finished!!

Channing is now home from his last scheduled inpatient!!!  It is very exciting for our family.  It is always fun when Channing come home because he and Jakob have so much fun catching up and playing together :)  They are so fun to watch as they get reunited. 

We will now be moving into the last phase of treatment called Maintenance.  It is his last and final phase which will last 2 years.  It is kind of a weird schedule but I will try to explain it.  Channing will go in on Aug 31st for his first treatment of Maintenance (kind of a bummer because he starts school the next day and will be all 'drugged' up, but hopefully it will be ok).  He will get VinCristine, an spinal Methotrexate (sedation, with a spinal tap to give the drug), and he will start the steroids again.  Then he goes back in a week later and will stop the steroids and will get VinCristine.  Then he is off for about 2 1/2 months (with 2 local blood draws) and then goes in for a spinal Methotrexate (with sedation).  Then he is off for about a month and then starts the whole process over again.  Confusing, yes, but very exciting to have a nice long break during the treatments.

This has been perfect timing.  Channing finished his last inpatient, and his baby brother has yet to come (6 days overdue now), and he will start school and Maintenance at the same time.  We are excited for these new things to happen!!

Inpatient Postponed...

Sadly, Channing's last inpatient is being postponed.  Channing got the hand, foot, and mouth disease that Jakob had last week.  It is so mild that if you didn't know what you were looking for you wouldn't notice the 3 red dots on his hands, and the 5 on his feet.  Channing didn't have a fever with it (which normally a fever is very common for multiple days).  But, because it is a virus and because the Methotrexate (the chemo Channing gets at inpatient) will target 'weak' areas the doctors are concerned that it could potentially cause Channing more harm.  So, they made the decision that Channing can't have his last inpatient until every last bump is gone.  We rescheduled for a week from tomorrow. 

I was pretty devastated at first, and was at least able to hold in my emotions until after I got off the phone with the nurse practitioner.  To be honest, I cried for the next few hours off and on.  Just frustration, sadness, annoyance, etc.  And it doesn't help that I am 9 months pregnant so my emotions are completely out of whack.  I just keep telling myself that its probably for the best, and that it will all work out.  Now, I get to be excited and hopeful about having this baby in the next week, instead of worried that the baby will come while I am at the hospital with Channing.  It seems so unfair that I have to stress about when this baby will come instead of letting the baby come when he is ready.  Now, I get to be hopeful that I have this baby sooner rather then later.  Really, I just want to be done with this whole situation and have my son and my baby (and all of my family) together without the stress of cancer.  Ah, wishful thinking...

Update

I am feeling much better which is nice, I still have a cough, but its not bad.  Jakob is acting like his crazy normal 4 yr old self, which he pretty much has the whole time he has been sick.  And so far (fingers crossed) no one else is showing any symptoms of anything.  I am assuming that has to do with our frequent sanitizing of surfaces (my house has never been this 'germ free'), and the hourly hand washing/ hand sanitizing.  All I do is randomly yell out "hand sanitize" and all the kids stop what they are doing and run over and put some antibacterial on their hands and rub it in.  Ema (the 2 yr old) is pretty proficient at it, though she needs help pushing the lever down.  I have also been checking temperatures randomly throughout the day because that's what Jakob started out with.   My kids may be germaphobes in the future, but its helping us in the now :)  I have always been a bit overboard when it comes to germs but this week has probably been a lot overboard.  At least I can say I did what I could to keep the kids healthy, and if Channing gets sick, he gets sick and we deal with it.  Once we are through the next few weeks I think we will go outside and play in the mud and let the kids get as dirty as they want!

I am actually really enjoying how clean my house is, and I think the kids are too.  They seem to love running through the house without the fear of stepping on something or tripping over something.  It hasn't been that bad since I have been keeping up on it daily instead of letting it go a day or two (or 3) and it taking forever to clean and it being overwhelming.  I think I have gotten into the habit now of just constantly picking up and the kids have been too, which is a big help.  And will be an even bigger help once this baby is born. 

One week exactly until baby boy is due!!!  I am getting really excited about it all.  Everything is ready to go and I just keep thinking of little things that I can do to keep getting ready.  I think this is also what is driving my clean house, I don't want it to be a complete disaster when we have to head out to the hospital.  Now, if only we had ANY idea of this child's name.  The few that I like, Kindt doesn't and the few that Kindt likes, I don't.  Hopefully once we meet the little guy face to face, we will be able to choose a name. 

I am excited about the big milestones in the next week or so-  Channing is done with his scheduled inpatients and moves into the last phase of cancer treatment, we are adding a new baby to the mix, and the boys will be starting 4K half-day (which they are ridiculously excited about :)!! 

Life is good!!