Thoughts

I've been thinking a lot about the last 8 months of our lives.  About how much we have been through.  I have been really emotional lately thinking about it all.  I cry if there is any reference to cancer in movies, shows, songs, and even at church.  The last 3 months I have kind of been 'pretending' that we have moved past cancer.  We haven't, I'm not sure we ever will, it will always be a part of who I am now.  I wish I could just say my son was perfectly fine, but the truth is we have constant reminders of just how sick he is/was.  Channing still gets up some mornings and hangs over the toilet, saying he is going to throw-up. Anytime one of the kids are sick and I tell them I am going to call the Doctor, Ema says "Yeah, because I need to get my port out".  It is cute but I always wear a sad smile when I hear it - it is a reminder just how much our lives have been affected. 

Kindt and I were watching the TV show 'House' the other night and it was about a possible small pox outbreak.  The CDC came in and shut down the hospital, no one in or out.  In one of the hospital rooms a little girl was waiting for her mom to return with her favorite stuffed animal so that she wasn't so scared for her cancer treatment.  I couldn't keep my emotions in when the doctor told her that her mommy and stuffed animal couldn't come in but that she needed to be brave and do her treatment without them.  I was heartbroken.  It brought me back to those days in the hospital and how hard it was to not be the one with my son, and how hard I imagine it would be if I couldn't be there when Channing needed me.  It hurt.

I recently found out about another little boy who was diagnosed with cancer.  It broke my heart.  I once again re-lived the feelings from when Channing was diagnosed.  No child, no parents, no family, no one should EVER have to feel that way.  I want to fix all of these children, make them better, make them not suffer.  I want to hold their parents and cry with them.  I hope and pray that this little boy gets better quickly and that his parents are comforted as much as possible during this time.  I feel a little guilty when I hear how much worse things are for other kids with cancer.  I feel like we had a 'fairly easy' ride comparatively - I feel I have no room to complain because so many other kids are fighting so hard and are getting knocked back down so many more times then Channing ever was.  I wish there was more I could do to help others who have to travel this hard, and terrifying road... I pray that cancer research gets the funds that it needs to be able to limit suffering and find a cure for this terrible disease.

I am not sure exactly why I have been so emotional lately.  Maybe its because Channing had to go back in for a spinal chemo for the first time in 3 months.  And it hit me hard.  I could no longer 'pretend' that Channing was perfectly fine.  Any time they run his blood I wonder if maybe this will be the time we find out the cancer is back.   Anytime Jakob gets sick I wonder if there is the possiblity he too now has Leukemia.  I don't think those creeping fears will ever completely go away...

Maybe its the season.  The fact that we have a whole holiday dedicated to remembering and being grateful for blessings.  I thank God every day for my 4 precious children.  For each of their unique personalities.  It hurts when people make comments about 'having my hands full' or 'double trouble'.  There was a time when I didn't know if my son was going to make it through this fight.  I love having my hands full, and having double the fun, and yes sometimes its a zoo, but I wouldn't change it - not for one second.  I am grateful that my 'cancer kid' is healthy enough to be able to run and play and make my home a zoo.  I am grateful for the crazy, silly, fun, and precious moments I have everyday with each of my gifts from God. 

Maybe its the Christmas season and remembering the birth of our Savior Jesus Christ and all He has done for each and every one of us.  I love the Christmas season for so many reasons.  For the time spent with family, for the reason for the season, for the love and compassion so many people show at this time of year.  My wish is that we can show that love year round, that we may not judge others and that we give of ourselves the whole year long.  And most of all that we remember to thank our Father in Heaven for all that we have.

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!!

Sickness

Sadly, I am sick.  Jakob is also sick.  This worries me a lot since Channing's inpatient is scheduled for one week from today.  If he gets sick then he will get pushed back, which means I will be having a baby for sure while Channing is in the hospital.  Right now I am just praying that Channing doesn't get sick.  I am doing everything I can to keep every one's hands clean but there is only so much you can do.  I realize I have no control over if Channing gets sick but it may just break me if he does.  Things have been going so well, and we have been so blessed so I really feel I have no right to complain about the possibility of Channing getting sick... 

Just send prayers our way that Channing won't get sick, or that if he does I won't completely loose my mind ;)  I know that things will work out, they always do, even when it isn't the way we want or intend them to.  I am trying to rely on faith and hoping that we can make to Chans last inpatient with no problems, then have this sweet baby and move on from all of this crazy baby/Channing hospital stress into all the other stresses of life ;)

No news means good news

We've had a pretty easy going couple of weeks.  Nothing too big or exciting to report.  Channing had his 2nd to last inpatient last weekend and everything went as planned.  He has been a little sick this week, throwing up and just feeling tired and yucky.  But that is to be expected the week after he gets so many drugs pumped into him.

We are preparing for the arrival of baby boy in a little over two weeks.  We have pretty much everything we need to make it to and home from the hospital.  We are hoping that baby boy stays inside until his due date of Aug 15th.  Channing's last scheduled inpatient will end on Aug 14th, so we are at a little bit of a tight schedule with baby boy coming and Channing being in the hospital.  I was a week overdue with Ema so I am hoping I can hold out until Channing is home from the hospital.  We have plans in place in case baby decides to come early, but we are really hoping that he comes after the 14th - it would make our lives a little easier :)

At this last inpatient the nurses were very concerned that I was going to go into labor.  I just laughed and said wait for 3 weeks when I am due and in the hospital with Channing then you can be concerned :)  Too bad Channing's hospital doesn't deliver babies or we could share a hospital room. 

Thats all for now :)

Cancer by the numbers

In 4 months its been...

14+ trips to Madison

2 blood cultures

69 blood draws

2 blood transfusions

2 bone marrow aspirations

1 surgery (port placement)

1 echo cardiogram

6 inpatients

7 lumbar punctures

9 + new medications

1 platelet transfusion

17 port accesses

7 sedations

6 xrays

It puts it into perspective when you see the numbers laid out like this.  My son is going through so much in only 4 months time.  This means that I have had to leave my daughter in the care of someone else (amazing someone elses) 14+ times as well as during the 6 inpatients.  This means my boys have spent a total of 24 nights apart (6 inpatients 4 nights each, so far...), when they had never had a night apart before cancer.  This means my son has had 345 mls of blood taken out of his body (69 blood draws with at least 5 mls taken each time, most likely more then that!). 

This doesn't even take into account the total of all the medications he has taken or the amount of toxins we are pumping into my son.  This doesn't take into account the countless times I have had to wear gloves to wipe my son, or help him go to the bathroom.  It doesn't take into account the nights we were up with a son who constantly had to go to the bathroom, or was starving and on 'roid rage' (what they call kids on steroids).  This doesn't show the amount of burritos and peanut butter sandwiches I have made for a son who will only eat those things.  This doesn't show the emotional toll that it takes on everyone who loves and cares for our son. 

This also doesn't take into account the countless cards, notes, dinners, clean houses, hugs, smiles, monetary gifts, gifts to help my children,  gifts given to me to help me cope better, phone calls just to see how we are doing, prayers and so much more that has been done for our family to make the above that much easier.  I wish I would have kept track a little better of all the things we have been given.  We have been blessed immensely by all those we know, and by many strangers.  If we have to be going through what we are going through I am so grateful to have so many of you supporting and helping us.  We are truly blessed. 

4 years ago

Four years ago I got the biggest shock of a lifetime.  Most of you who know our family, know what I am talking about.  Four years ago today my twin boys were born, the thing is we didn't know that their were two babies.  I had a completely normal pregnancy with one little boy.  After Jakob was born, they laid him on my chest and I couldn't believe that I was actually a mother to this little boy.  Then all the sudden, the doctor shouts "I need more nurses!! There is another one in there!!".  Channing was born 5 minutes later.  Thankfully, both boys were healthy and happy.  Kindt and I were in complete shock and couldn't believe that we were now the parents of not one, but TWO little boys.  I have always thought of Channing as my miracle child because of this experience.

The first night in the hospital after the boys were born, Kindt and I didn't get a lot of sleep.  We were talking about how we suddenly had twins and what that meant.  I was so scared.  I didn't know how to take care of one baby let alone two!  I asked Kindt why he thought why Heavenly Father gave us these two little boys.  I remember vividly Kindts answer "Because Heavenly Father trusts us".  I knew that we could do anything and that while it was not going to be easy Heavenly Father trusted me with these two sweet little boys and that with that trust I could do this and I would do the best that I could.

These comforting words from my husband came back to me when we found out that Channing had Leukemia.  I didn't wonder why we were dealt this hand, or get upset at God for 'doing this' to our son, to our family.  I knew that Heavenly Father trusted us and that was good enough.  We would do our best, rely on God and we would get through this.  Now, this is not to say that I didn't get upset that my son had to deal with this, or get angry at cancer for taking away certain things, or get mad at cancer for changing our family dynamics.  I did and still do get angry and cancer for disrupting our lives.  But, I do not 'blame' God or get angry at God for doing this because I know that He knows all and can see the bigger picture.  I have already seen the amazing changes for the good in our family because of Channing's cancer, I have seen the changes in others, I have seen the changes in myself.  I know that we have a lot more growing to do and that we will get through this and we will all be stronger for this trial. 

Since cancer struck days like this I get a little emotional.  Almost exactly 4 months ago I didn't know if my son was going to live through this or not.  I didn't know if my son was going to get a 4th birthday.  Thankfully, my son is doing amazingly well.  And the fear of death is not really something we worry about.  He most likely will not die from cancer (95% survival rate).  I am grateful that my son has made it to his 4th birthday and I know that he will have many many more birthdays.  I am excited to see my little boys continue to grow and learn and love watching them every day. 

I am truly blessed to have twins and am thankful for my crazy little (how long can I call them little for??) boys every day.  They are the best of friends, and will always have a built in confidant and friend forever. 

HAPPY BIRTHDAY JAKOB AND CHANNING!!!

Our Crazy Clinic Day

Have you ever seen something or read something and wondered what it would be like to experience or see it?  Like seeing the Eiffel Tower, or Washington Monument, etc - Sometimes it is a good thing, sometimes it is a bad thing. 
When my sisters and I were younger we went through a phase where we loved the author Lurlene McDaniel.  From what I remember most of the books were related to a disease and what it was like for all those who knew and loved the person with the illness.  Anyways, the Ronald McDonald House was a constant in most of the book as a place for the family to be close by to the patient. When reading these books I always wondered what the RMH was like and always wanted to see one.  Well, that 'wonderment' came true and I now know first hand all about the RMH and how amazing it truly is.  That's an example of the question above - I wondered about something and now have experienced it, and while I would rather have not had to have a child with Leukemia to have seen the RMH at least I no longer have to wonder what the RMH looks like :)  (**If you are curious google a local RMH and I am sure they would be more then happy to give you a tour of their facility and if able you can leave a $10 donation which will give one family a free night at the RMH)

Another thing that has fascinated me as a child was those Run Away Truck Ramps.  I know here in flat Wisconsin the ramps are few and far between but growing up in Northern California with steep mountains we saw them often.  I always wondered what it would be like to drive a truck into one of them.  I have never experienced this, and really hope to never have to (pretty sure this one will never happen) but it is something that I have always wondered about. 

Another 'wonderment' that I have had since I was able to drive was what would happen if your tire blew out.  You always see those tire pieces in the middle of the road and I wondered what happened at the point the tire blew - did the car swerve all over the road?  Did the brakes work properly?  etc.  Well, lucky me got to experience this first hand yesterday on our way to Channing's clinic appointment.  We were about 20 minutes from the clinic (so a little over 45 minutes from home) when the car started shaking and I wondered if it was the road or the car.  I HATE pulling over on the shoulder of the road (random quirky fear of mine, I have a lot) because I am afraid another car will hit us while we are stopped (I had a scary dream of this happening a couple years ago).  So, I switched lanes to see if it was just the road, it wasn't.  Right after I realized I was going to have to pull over on the shoulder my tire blew.  Thankfully, the car did exactly what I wanted it to and I pulled over onto the dreaded shoulder with no problems.  I got out to check and see exactly what happened and was greeted with this:

Thinking it probably wasn't a great idea for me 8 months pregnant to change a tire (I do know how!)especially since no baby is allowed come till his due date, August 15th, and I do not want to do anything to cause me to go into labor early.  So, I called Kindt and asked what his thoughts were.  I knew I could someone in Madison, and I knew I could call someone from Janesville (20 minutes south).  Kindt thought it would be best for him to leave work and come rescue me so that we could also get the car taken care of right then and there and not have to worry about how to do it later.  I agreed.  I called Channings Doctor and told them the situation and asked if we could delay our appointment for 2 hrs.  They were able to accommodate us and we began our 45 minute wait buckled into our seats in the van watching a movie. 

Kindt arrived about 45 minutes later and quickly put the spare on.

My hero :)

Then we got to drive down the freeway at 45 miles an hour with our hazards on... we weren't making many friends on the freeway.  It took about 30 minutes to get to the repair shop in Madison, when it would normally take 15.  Kindt and Jakob waited at the tire center while I took Channing to his appointment.  Amazingly, we were right on time for the appointment!

Channing's appointment went really well, and was actually one of the quickest appointments we have ever had in clinic.  They didn't have to do his blood counts and wait for the results (which can take up to 2 hrs) because he had just had his counts the day before (he was really lethargic so we took him into the local pediatrician to do a quick check up).  So, we just had to wait for the oncologist to look Chan over, then access his port, then do the 5 minute IV push.

The doctors knew that Channings birthday was the next day (today!!) so they gave him an extra special treasure box toy.

Gotta love his 'smile', its beginning to be very similar to Jakobs wide eyed crazy faced 'smile' :)

Jakob and Kindt met us at the clinic and finished out the appointment with us.  So, other then the random blown out tire it was a pretty uneventful good day :) 

Do any of you have any things that you have always wondered about and maybe hoped that you would experience and did, or maybe hoped you would never experience but it happened?

4th Inpatient and 4th of July

This most recent inpatient (June 30-July 3rd) went really well.  Channing had hydration (IV fluids to get his PH levels where they need to be quicker since he has to fast for the LP (lumbar puncture) at 8:00am Thursday morning.  Since it was so early we decided it would be best for Chan and I to stay the night at the RMH (Ronald McDonald House) Wed night.  Apparently lots of families had this idea and the RMH was full.  Whenever this happens we are put up in a hotel for the same $10 fee and the RMH charity takes care of the rest.  So, Chan and I got to stay in a nice hotel for nothing!  Also, since we were vehicle less and the hotel was about 15 miles from the hospital the RMHC arranged for a cab to pick us up and take us to the hospital free of charge.  I am so grateful for the amazing help that the RMH gives to our family.  This is truly an amazing place for families to stay when they have children in the hospital. 

Thurs morning we got to the hospital bright and early.  Chan's port was accessed, blood was drawn and he was hooked up to the IV for fluids.  Chan does an amazing job when he gets his port accessed, he sits still and doesn't move a muscle, but is also very relaxed.  It helps that he has child life with an IPad there to distract him :)  Since he did such a good job the nurse let him choose an extra special big treasure box toy.  Channing chose Tickle Me Elmo Hands. 

He thought they were hilarious and any time someone came into the room they let him tickle them with the gloves :)  These people are seriously amazing!

Then we get to wait.  From 8 until 1pm when he has his LP.  We entertain ourselves with the Leapster, coloring, and cartoons mostly.  It does get a little old after awhile but Chan is a trooper.

After the LP we headed up to our inpatient room and had an uneventful night.  On Friday the AFCH had a special visitor for the kids.  We got to meet Dora and Boots!!  Channing was excited to meet Dora and even more excited to see that Boots came too :) 

Kindt came up after work on Friday and I headed home.  On Saturday we brought the whole clan up to watch fireworks from the hospital window and then stay at the RMH and drive home together on Sunday. 

 Channing was one of 2 patients, and the other was an infant (there were 2 other kids but they were in isolation because they were soon to be receiving bone marrow transplants), so we pretty much had the run of the place.  We got to sit in an empty room and watch the fireworks go off across town.  The boys were entertained for about 15 mins and Ema only a few. 

It was a little much having Ema at the hospital - she gets wild.  She has a hard time understanding that Channings tubies are not a toy, and to be careful not to trip over them.  I don't think we will bring her up for that amount of time again, it was just too much but it was worth a try. 

We didn't do much for the 4th of July this year because we were all recovering from the inpatient stay but my kids did look cute in their 4th of July clothes :)

I am sad I didn't get a picture of all three kids together, but Channing looked just as cute as Jakob does in this picture ;)

Now, we only have 2 inpatients left to go before the baby is born and Chan is in Maintenance!! Yippee!!

Water Tower Run and Taste of Clinton

First, I want to thank everyone who came out to support us, and who walked or ran the race.  Also, I want to thank everyone who did so much to make the event happen and such a success.  Our family really appreciates everything that everyone has done for us. 

Let the race begin!!

Kindt and Chan waiting for the race to start.

Ready, Set, Go!!

Off and running.

I didn't actually participate (I know, but my plan is that I will at least walk, and maybe run next year), and sadly this picture is the only picture that was taken of me...but proof I was actually there :)

 Channing, Kindt, Jakob and the kids grandfather all walked the race.  The boys mostly rode on the shoulders of Kindt and Dennis but they still participated.  Channing was so cute as he ran to the finish line :)

I wish I had a video and you could see the HUGE smile on Chans face as we cheered for him as he crossed the finish line.  Sadly, our camera battery died right before Chan actually made it to the finish line.  Which also means I didn't get a picture of Jakob and Dennis crossing the finish line, but they did, and if you look really closely in the background of the picture above you can kind of see them.  It would have seemed that Chan was a completely normal almost 4 yr old until he threw up in the bushes after the race. He was fine, but we get those reminders that he does have cancer and that he isn't quite able to do all the things normal almost 4 yr old can.  But some day he will and he really is doing great :)

I took a few pictures (after getting the other camera) of the huge group of people who came out and supported us, these pictures don't even do justice to all the people that came.

THANK YOU EVERYONE!!

Come October I am going to start training, or at least walking or running, or maybe joining the gym so that I can participate fully next year.  Hopefully many of you can join our family in supporting whoever is the benefit for next year :)

Since we had been telling the boys that we were going to the Water Tower Run, and their shirts had a picture of the Water Tower, the boys were really excited to see the Water Tower.  So after the race we went up to the old water tower. 

 Ema, Chan, and Jakob

Chan and the water tower :)

I just thought this was a cute picture of Channing :)  Almost like saying 'Victory'!! 

The boys thought it was pretty cool and Kindt told me that he used to play at the water tower when he was a kid so we are just passing on the tradition :)

After the race there was a whole day of things to do in Clinton - it is called 'Taste of Clinton'.  They had garage sales, the MDA tub run (over 1,500 motorcycles came into our little town!), vendors, a car/truck/tractor/motorcycle showing, performances, clowns, face painting and more.  It was a lot of fun. 

We sat outside to watch for some motorcycles to drive by and I had a fun time taking pictures of my kiddos while they watched for motorcycles. 

Handsome Channing :)

Channing, Ema, Jakob. 

The kids would get really excited anytime a motorcycle drove by :)

After nap time, we headed downtown to see that 'Taste of Clinton'.  A local bar had Packers legend Jerry Kramer come sign autographs and the proceeds are going to Channing.  We stopped in to say thank you and to meet Jerry Kramer.  He is a really nice man, and he surprised us all when he let the boys try on his Superbowl ring!! 

It fit loosely over two of their fingers!! 

The boys didn't fully understand what a neat experience it was, but I sure did and I was smiling for days over it!  I am sure when the boys get older they will realize what a truly special experience this was!   

Packers legend Jerry Kramer, and us :) 

After meeting Jerry Kramer we walked downtown to see all the vendors, cars, and other things that were there. 

I told the boys to pick their favorite car and they choose these two...

It made me laugh when I realized that the choose cars that matched their shirts :)

We watched the clowns make balloon animals for awhile, and watched a few of the performances before we decided to call it a night.  It was such a good day and I will always look back on this day with fond memories. 

3rd Inpatient, June 9th -12th - Half way done!!

Chans last hospital stay was pretty uneventful - which is always a good thing!   Jakob and Aunt Brittany came up to drop us off and ended up staying until a little after 5.  It was so nice to have someone else there to break up the mundane-ness of the hospital and also so that I could leave for a bit and go to the bathroom or get food without feeling like I was ditching Channing and had to book it back.  I think it was good for Jakob too, and he was really good for Britt and I.  The boys had a lot of fun playing and watching cartoons.  It was funny to see the reactions of the doctors and nurses when they weren't quite sure who was who, though after a quick inspection its easy to tell that the really pale, thinned haired child is the cancer patient :)

I had a stuffy nose and was feeling pretty exhausted after the first day so I decided to head home and let Kindt finish up the weekend when he arrived on Friday evening.  Channing also got a surprise visit from Nana (Chans grandmother, Marianne) who was on her way home from a meeting and had to pass through Madison.  Nana and Channing painted pictures in the playroom while Kindt and I went to dinner.  Kindt and I really don't get out much just the two of us and it was nice to have that time together.  Marianne took me home and kept the other kids overnight so I could get a break.  I slept until noon the next day!  I can't remember the last time I was able to do that.  Then Britt took Jakob to go visit Chan for the afternoon on Saturday and the boys had a good time together painting more pictures (anyone want a painting I have a lot ;).  I got to have some time with just Ema which was a lot of fun for me, though she was a little cranky.

Kindt and Channing came home on Sunday and the kids were happy to play together and fight again :)  When Channing gets home from the hospital its always an adjustment for all of us.  Channing is used to having all the attention and getting to do what he wants (mostly) and the other kids are overly something over mommy and daddy being back home and having a different schedule then normal.  It usually takes a few days for us to get back to normal, though for some reason this time it has taken longer and I still feel like we are out of whack.  It might be that I am 7 months pregnant and don't sleep well so am constantly exhausted, but whatever it is we get through it.

We don't have any pictures from our last stay, but I will leave you with a cute picture of my babies enjoying having everyone back together :)


Aren't they cute??    :)

Local Blood Draws

Since the AFCH is almost an hour and a half away Chans doctors and nurses allow us to do local blood draws if that's all that needs to be done.  Last week Thursday the 2nd we were able to do the local blood draw instead of take the drive all the way to Madison.  I was excited that we didn't have to go all the way to Madison and had Aunt Brittany stay home with the other 2 kids while Chan and I headed the 10 minutes to the local clinic.  I was hoping it would be a fairly quick and painless process. 

From the second we got into the car I knew it wasn't going to be very easy.  Channing was already starting to have anxiety, and was getting frustrated that we were doing the blood draw at his pediatrician inside of at his 'hositbul'.  I explained that it was easier to do here and that they would just poke his arm and get some blood out.  He was still upset, but knew he didn't have a choice. 

I had put cream on Chans arm but had only put it on 30 minutes before and it usually takes an hour to work best.  I figured it was more of the idea of it then anything else - arm pokes really don't hurt that bad.  *Funny story - Aunt Brittany gave Channing some cookies to take with him as a treat for going to get his blood draw.  As we were driving Channing asked what was in the middle of his cookies.  I told him it was cream.  He said "EWWW thats gross!".  It took me a minute to make the connection when I realized that he thought it was his numbing cream inside the cookies.  I started to laugh and explained that the cookies had frosting cream not numbing cream.  He still refused to eat them :)

We went into the clinic and headed back to the lab.  Unfortunately, They had to dig in his left arm for about 45 seconds and couldn't get anything out.  Then they had to try the other arm.  Channing was a wreck - well as much of a wreck that he gets about these things.  He had tears going down his face and said I don't want to.  He still held very still and let them poke him but it broke my heart.  They finally got some blood out and Chan calmed down and watched them suck the blood out. 

We got into the car and I was exhausted emotionally and physically, I can't even imagine how Channing was feeling.  I asked Channing if there was something he wanted to do as a reward and he said no.  I gave him some ideas but he really didn't want to do anything.  I was hungry (as I always am :)  so I went and got some food.  Channing then decided he wanted to go say hi to daddy at work.  So we surprised daddy and talked with daddy for a few minutes and then sent him back to work.  Then Channing decided he wanted an ice cream cone, so we went and got him and ice cream cone.  We came home and I felt a little bit better but knew that I couldn't do that again. 

On Monday we had to go back in and do another CBC.  This time I brought Kindt with me so that I didn't have to sit with Chan while he was being poked.  I put the cream on a good hour before the blood draw and prepped myself for the worst.  Kindt took Channing and Jakob back and I sat in the waiting room with Ema.  It was taking awhile so I went back with Ema and they had already unsuccessfully poked one arm.  The nurse went and found another nurse and they tried the second arm.  Thankfully they got blood on the first try.  Channing didn't move and didn't cry.  I could tell he still had some anxiety but it went so much better this time. 

Unfortunately the stress of it all or something caused Channing to snap when we got to the car.  We then proceeded to have a 2 hour fit from Channing.  I won't go into the details but any of you who have ever seen a Channing fit know what I am talking about.  He gets it into his head that he wants us to say a certain thing or do something a certain way and if we don't he freaks out, and he expects us to read his mind and know exactly what he wants.  It was so hard for me because I knew that he wasn't just being a goober but that he really had a not fun experience and his emotions were coming out in the form of a fit.  We are working on how to have compassion with Channing (and all the kids) while still maintaining discipline and structure.  We just have to do what we have to do to get through the moment or they day.  Some days I have more compassion and some days I have zero patience.  I think that is how it goes for most families though :) 

I think I have a better idea of how to make it less traumatic for both Channing and I.  Hopefully the blood draw we have to do tomorrow in town will be a much better experience for all of us!

Thank you!

I wanted to share a story with all of you. Two Sundays ago I was pretty grumpy, just overwhelmed by everything.  I walked into church and sat down, already feeling exhausted.  A sweet women called me over and handed me a handmade bear for Channing.  I was overwhelmed with appreciation and love for this women who took her time and talents to bless our lives.  Each stitch was made with love.  Channing held and loved his bear all week long, and the kids called the bear Channing's hospital bear.  This last Sunday we sat down at church and we were handed another blue bear and an adorable pink bear.  This women not only made one bear, but three.  One for each of my sweet children.  My kids LOVE their bears.  They carry them around the house like treasures, and Ema will not sleep without hers.

Every time I see these bears I think of this sweet women, and I think of all of you who have done something for my family.   I am touched by how much support and love we have received in the last 3 months since Channing was diagnosed.  People have sent and given us cards, money, gas cards, toys, hugs, dinner, a clean house, taken my kids for a day or days at a time and so much more.  I can never thank all of you enough for all your prayers.  I know that is why we are still hanging in here and why Channing is still doing so well.  This has been one of the hardest 3 months of my life and will continue to be hard for us, but knowing I am not alone has lifted my burdens and has helped keep me positive.  I wish I could thank every single one of you personally, and I apologize for not keeping up on thank you notes, but time and energy has been elsewhere.  I want you to know that each act of service and kindness has been hugely appreciated.   Thank you for each thing you have done, it may seem small to you, but each hug, smile, letter has a huge impact on my attitude and appreciation for all of you.  I find that right when I am getting discouraged there is something or someone there to cheer me up, I know that God is using you as his messengers.

THANK YOU!

Side Effects

When Channing was first diagnosed I was afraid of what side effects my poor boy would have to endure.  Amazingly, so far his side effects have been minimal.  The first couple weeks Channing was completely withdrawn.  He liked to lay in a dark room with the lights out and stare at the walls.  He would do this for hours.  Thankfully, he snapped out of it after a couple weeks because it was heart breaking.  After that during the first month the biggest side effect was the non-stop burrito/salt craving from the steriods, And the constant need to go to the bathroom.  We were up with Chan 3-4 times a night taking him to the bathroom, it was almost like we had an infant in the house.  My amazing husband always got up with Channing at night because of the 'toxic' urine and because I am not a very good person in the middle of the night and tend to make things worse.  We didn't get a lot of sleep that first month.

I was told that Chans hair should start falling out 2-3 weeks into treatment, so to prepare we cut Jakey and Chans hair shorter.  Channings hair did thin out a bit, and became more coarse in texture, but he never did loose it.  It still could happen but for now its the same length it was when I cut it because it isn't growing much.
Channing also had a hard time with physical activity during the first month and a half of treatment.  He couldn't walk in a sandy playground or climb the playground equipment.  It was so sad to see him try but not be able to do something he was able to do just a month earlier.  One of the chemos that Chan gets can cause problems with motor skills in the nerve endings, and this is what partially made it hard for Chan to do these things.  The other issue was the rapid weight gain that Chan had due to the steriods.  We would joke that Chan and I were competing for largest 'baby' belly, but that I had 9 months to get used to the weight gain and Chan only had a week. We avioded parks for that time, because it broke my heart to see him get frustrated when trying to do something he couldn't and not understanding why.  Now, he is basically back to normal with climbing, walking, and playing.  Though he does still make a very large stance with his legs to keep his balance when getting up.

Another side effect in the first month was constipation.  If you have read my blog up to date then you know a lot about what we dealt with.  Poor kid had to have adult laxatives multiple times to help him get cleared out.  He also had 4-5 x rays to the stomach tomake sure there wasn't anything stuck causing the problem.   It was very frustrating for me, and I was annoyed that such a 'small' thing as being constipated could cause such big problems in a cancer patient.  I also felt like a bad mom beause they would ask me when Chan had his last bowel movement and I had a hard time remembering if it was Jakob who went or Chan who went. I am constantly forgetting which child did what because they are the same age and do (did) things so similarly. 

After the the first month, most of the above side effects were limited.  Now, with his new medication Channing has no appetite, and things that used to be his favorites he refuses to eat.  He is also throwing up every other day to every 3 days.  We think this is because of the oral chemo he gets every night.  He are trying to remember to give him his anti-nausea medicine when we give him his oral chemo to limit his throwing up.  Poor kid does really well with the throwing up, he just yells "Im gonna throw up" and runs to the bathroom.  Then he lays down for about a half hour and is then back to his normal crazy self.  

Channing is basically a normal almost 4 yr old (I can't believe in one month my babies will be 4!!!).  He runs, plays, fights, and laughs.  He just talks about his dr and his port all the time.  He is far more knowledgable about medical things then any child his age should be but he does a great job of doing what he needs to do to get better.

Pics from Inpatient May 23-26

Since we had to wait for blood results for the inpatient we took our time and explored the AFCH and the UW Hospital.  They have a lot of fun play areas for kids which is great!

I was hungry so we decided to get some food at the cafeteria.  All Chan wanted was onion rings, but he told me I wanted pretzels and cheetos so we got those too :)

During Chans inpatient after he was no longer recieving his Chemo infusion we went back down to the cafeteria.  It was quite interesting holding the food tray, Chan's IV pole, all the tubes, and keeping Chan close so he didn't yank out his tubies.  We managed though :)

 Outside the cafeteria they have a fountain that people have thrown coins in so I told Chan it was a wishing well.  He really enjoyed making a wish and putting his money in there.

And now, we go back on Thurs for his next 4 day inpatient.  And I am sure we will be doing some of these same things again!