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!!