Remembering

Chan's blood work came back great yesterday so we are now inpatient, and have started Chan's IV Chemo.  Right after we got here the hematologist came in to see how we were doing, and asked if we would like to meet the family next door who's son was just diagnosed with ALL a week ago.  My heart broke when I heard about another family having to go through this. The little almost 3 yr old was having a hard time taking his meds and the hope was that having a little friend talk to him about it might help.  I was more then happy to meet with the family.  The mom and I talked for awhile (as best as we could with two little boys who wanted to play, eat and walk :).  It was weird having to reflect back on what happened two months ago with diagnosis for us; The feelings, thoughts, struggles that I went through.  Shock at first, then fear, then acceptance.  I have pushed that time out of my mind because it was a scary time but it was interesting to revisit those feelings again with someone else.  It was nice to talk about it all and have it all be in the open.  I don't think I really put my feelings out here on the blog so I thought that's what I would do now. 

I remember when the hematologist first came into the room with the tissues in her hands with the news.  I tried to be strong for her so that she didn't feel bad that she was giving us such heartbreaking news.  While she spoke to us I was sitting on the bed combing my hands through Channings hair while he was still asleep from the sedation.  I kept thinking, this poor little boy is going to go through so much.  Then I turned and looked at my husband and thought about how hard this is going to be for him and his family after loosing his mother to breast cancer in 2005.  This family didn't deserve to have another cancer patient in their lives.  I thought about Jakob and how this was going to change everything with the boys.  I thought about how we were going to tell the aunts, uncles, cousins, grandparents that Chan had Leukemia and I thought about how they were going to handle it, and those I was most worried about after hearing the news.  After going full circle thinking of how this would affect the other people around me, I realized I had yet to think about how this was going to affect me, and I pushed the thought aside.  I needed to be strong for everyone else, I needed to be the rock so that everyone else could see that it was going to be ok. 

Everyone kept telling me I needed to take care of myself for the health and safety of the child that was growing inside me.  So, I ate, slept, and rested for the sake of my baby.  I am not sure this would have been the case if I didn't have this little boy growing inside me. He kept me aware of the fact that I needed to eat, and needed to rest.  I kept strong for my baby. 

I remember the first night that I was alone, the second night after diagnosis.  I went to sleep at the Ronald MacDonald House (RMH) because I only got 2 hours of sleep the night before with all the worrying about my son, and constant check to see that he was breathing, and ok.  I was afraid to leave my son that night because I was scared something would happen while I was gone.  Chan was also going to get a platelet transfusion and I was worried about how he would do with that.  When I got into my room at the RMH I hated the silence, I hated that I had nothing to focus my mind on, and help me not think about all the things we had just learned in the past two days.  I was alone with my own thoughts.  I didn't get much sleep that night, but it was better then the night before.

That first week I was feeling a constant sense of fear and dread.  Not knowing how Channing was going to react to the meds, how he was going to handle being in the hospital, and not knowing if he was going to be ok.  I knew that that prognosis was great but I was still very afraid of the unknown future of it all.  I found myself thinking about Jakob and how he would handle it if something happened to Channing.  Thoughts no mother even wants to have.  I thought the constant knot, fear and dread was going to be a normal part of life from this point on. 

We were discharged that Tues, less then a week after diagnosis and I wasn't sure where to go from there, so I got back to 'normal' life keeping myself busy.  I felt like I had a newborn in the house again, checking on him constantly, being overprotective, asking if he was ok and if he needed anything.  Still having the constant anxiety and fear that something was going to happen.  That Friday night was the first time that Kindt and I really talked about things.  He had researched a lot and was telling me what he learned, and it made me sick to my stomach.  I didn't sleep all night, going in and out of the bathroom.  The next morning was worse and I was throwing up.  I broke down in my hallway bawling- Thinking that if my son got whatever I had it could kill him.


My sister took the kids the rest of the day over to the grandparents house so I could get better without having to worry about Channing.  Then on Sunday Kindt took all the kids to church and then over to the grandparents. I had two days to myself to think and process and start healing.  My body was finally reacting to the news and I am fairly certain that I was ill because of everything going on. 

On Sunday a good friend came over to bring us dinner and the two of us sat on the couches talking, laughing and crying together.  It was a good thing for me to talk to someone else, and be honest about how I felt and the fear of the future.  I don't really remember a lot of what we talked about but I do remember both of us saying how we really needed to focus on the good things, and every moment because you never know when it is going to change.  And if we keep thinking things will be good when, or better when, or I will be happy when, we will never be happy and never enjoy life. 

I don't remember when the constant anxiety, and fear left but it did.  I think it took a couple of weeks to get out of that crisis mode.  It took time to see how Chan would do with all the treatments and constant doctor appointments but once I saw how well he handled it all I was able to handle things a lot better. 

We are now 2 and a half months into treatments and honestly I am doing well.  I still have good and bad moments, and I never know what is going to trigger an emotional response, but I am not longer living with the constant knot in my stomach.  I miss my other babies when we are in the hospital (and my husband too :).  I get emotional when I have to drop them off at a friends.  Most of all I enjoy the little moments so much more.  I enjoy having Channing to myself and seeing his cute personality.  The nurses and staff and everyone seem to love my little boy and I love him too.  I wish I could have this one on one time with each of my babies but I make sure to let them know all the time how much I love them and appreciate them and how amazing they each are.

So, to those out there who are still in crisis mode - the knot will go away, the constant fear and anxiety will leave, and you will adapt and learn and become stronger to deal with something you never thought you would have to.  Live each moment, love each moment and enjoy the little things, because in the end its what you do with what you are given that matters.  Stay strong and keep on keeping on, no matter what obstacles and trials are in your life, because you will get through this.

2nd Inpatient

We got to the hospital on Thurs morning prepped and ready for the weekend stay.  Kindt drove us up and once we got the go ahead that all Chans counts were good and that we were going to be inpatient for sure, they would leave with the car so they weren't stuck without a vehicle (we only have one car, but Kindts dad and step-mom allow us to use their truck whenever we need it).  We got the go ahead a little before noon and sent Jakob and Kindt on their way so Kindt could get some work in. 

(The sedation room, Me, Jakob and Chan snuggling watching cartoons :)  And this is the same size bed Chan and I share inpatient too...it gets to be quite cozy...

Channing had a cough for a few days before we went in and I had called ahead of time to let them know.  There was some cracking in Chan's lungs so they did two breathing treatments to help get rid of the crackling.  It seemed to almost eliminate it.  Since that was the only symptom and Chan's counts were good the Dr's decided to start Channings Chemo.  First, they do the sedation and spinal chemo.  Because of the respiratory 'problems' (coughing) they didn't want to do a full sedation.  Instead they gave Channing meds that make him completely unaware of what is happening but his eyes are still open and flutter.  It is quicker to wake the child up if something goes wrong, and is less heavy on the lungs then the full knock out sedation.  He had this type of sedation when they did his first bone marrow to diagnosis because of the enlarged tonsils, so I knew what it was and how Chan would probably respond. 

Channing did great with the sedation.  After sedation we were taken up to the inpatient room.  The pediatric oncology wing was really full so we ended up getting a room in the Bone Marrow Transplant section.  Once we were settled the nurse came in to do Chans vitals (they do them every hour or two while inpatient).  Chan registered a fever of 100.6.  Anything above 100.4 with a cancer patient is a cause of concern.  They started Chan on a powerful antibiotic and put the Chemo on hold until the next day, Friday.

Chan didn't have any more fevers, and his cough seemed to be getting better so I was hopeful that we could continue treatment on Friday.  Every morning the whole team- oncology doctor, nurses, resident, nurse practitioner, pharmacist, social worker, etc- goes to each inpatient room and speaks with the parents about the treatment, how the child is doing, where to go from here etc.  During rounds the team decided that we should do a CBC and check Chans counts to make sure it would be safe to continue treatment. 

Chans counts came back low (360, and they need to be above 500) so they told me we were going to be discharged and we would come back on Monday to check counts and hope to continue this round of treatment.  We were also given a prescription for an antibiotic to treat whatever is causing Chan's counts to be so low. 

Hopefully when we go in on Monday Chans counts will be above 500 and we will be able to continue treatment.  It's a little frustrating having to figure out how to take care of the kids during the day Mon-Thurs but it is what it is.  It is also a little frustrating because the last date of Chans last day of inpatient was going to be Aug 14th and I am due Aug 15, and now we are pushed back even more.  Which means I have to face the reality of having having my son (and possibly husband) in the hospital while I deliver in a different hospital.  It isn't ideal, and really it isn't great but I have no control over it and so again it is what it is.  Kindt and I were talking and he said that it will just be another exciting story to put in our familys book of life :) 

I have been learning to let go of some of my obsession with being in control and dealing with the fact that many things and situations are out of my control and since there is nothing I can do to change them, I can be in control of how I handle them and how I feel.  The doctors are constantly giving me looks and saying, how can you be so positive, and understanding with it all.  And I look at them smile and say, theres nothing I can do to change it, I don't have a choice, so why let it bother me, it won't get me anywhere.  And while I know it is completely healthy and normal to let it out and get frustrated and mad (and I do) I just give myself the time to do that then move on.  I don't like dwelling on it because it makes me grumpy and I don't want to be grumpy :) 

So, in a day we will be back in the hospital hoping that Chan's counts are good and we can continue treatment.

Treasure Box

Channing gets to pick out of a treasure box every time he goes to clinic to reward him for going through something that was not fun.  Whenever Jakob comes he too gets to pick out of the treasure box.   Last Thursday when I dropped Jakob and Ema off at our friends house for the day, Jakob threw a fit.  He cried, screamed, kicked, and ran a couple houses down.  I really didn't want to take Jakob because then I have another child to entertain during a 4 hr clinic visit, so I tried to calm him down and left him screaming in my friends arms.  It broke my heart.  I pulled away and started crying.  I hate having to leave my children for that long, I hate that they are too little to truly understand and that they have to deal with all this, and I hate that my boys have to be separated so many times for such a long duration.  When Channing was diagnosed it was the first time that Jakob and Channing were apart for a night since they were born.  They have never before been apart like this, and I hate that it has to be this way.  The boys have always been on the same path, they have always done the same or very similar things at the same time.  It just is how it is with twins - its that special twin connection that everyone talks about.  Anyways, back to dropping Jakob off.  I have been racking my mind trying to figure out what I can do to make this easier on Jakob, and on all of us.  When I got back to my friends house to pick Ema and Jakob up, my friend told me something that Jakob had said.  Jakob said he likes going to Channing's doctor because he gets a prize.  My friend and I talked about it and we are going to do a treasure box for Jakob for every time I pick him up at her house.  This way he still gets to have fun with his friend, and I don't have to take him to Chan's doctor but he still gets the treasure that he desires and deserves.  I let the kids come with me to the dollar store and we bought a bunch of fun little things that I know the kids will enjoy for the treasure box.  I am excited to start this reward system and hope it turns out as good as my friend and I think it will :)

Maybe I need a chocolate treasure box to help me feel better and rewarded each time I have to drop my kids off ;)  

Taste of Clinton

Clinton has an annual 5K run/funwalk and this year they have chosen our Channing to benefit from the run.  Mark the date on your calenders - June 18th.  We would love to see as many of you as we can to support our little family.  I will get more information out as I receive it. 

First Inpatient Hospital Stay April 26-29

We had our first inpatient (out of 6) April 26-29.  The reason that it is inpatient is because of the specific chemo Channing is getting at that time.  It starts with a sedation and an intrathecal methotrexate.  Basically, they knock Channing out and give him Chemo to the spine.  Then 6 hrs later (optimally) they start the IV methotrexate which is then administered over 24 hrs.  In order to start the IV chemo Channings PH and hydration levels have to be within a certain range or level.  Unfortunately, this means testing his urine every hr, and in the middle of the night waking mommy and Channing up to make him urinate is not fun.  His levels were finally in the right area to start at 2 am Wed morning.  It was much longer then 6 hours, but we are going to start his IV to get him hydrated much sooner next time.  Then we wait the 24 hrs.  After that at hr 42 Channing is given Leucovorin.  Which basically prevents the harmful effects of the methotrexate; it protects the healthy cells, but lets the methotrexate kill the cancerous cells.  (How scientists ever figured this out is beyond me, but I will forever be grateful!!).  He needs at least 2 doses of the Leucovorin 6 hrs apart before they can test his urine (again) to see if we can be discharged.  The methotrexate has to be below 2% in order to discharge us, and for Channing it was well below that after the second dose.  So, that's why it is a 4 day, 3 night, hospital stay.  Interesting huh? 

Now, onto the exciting stuff ;)  Pictures of what Channing and I do at the hospital to keep ourselves entertained, and sane....

We got a great view outside our window this time ;)  Actually, it was a great view.  Channing loved watching the workers with their trucks and big machines, and especially the tall towers that move heavy things.  If you didn't know, Channing wants to be a worker - a Construction worker. 

I love this picture of Chan showing off his tubies connected to his port.  He wasn't attached to the IV pole at this point so everything was just hanging loosely on his tummy.  He was happy to be free of his 'friend' the IV pole. 

They have these All About Me posters that we fill out and color so that the nurses, and staff know what Channing likes and what a typical schedule is. 

We didn't fill this out till the second day, but it was so nice that none of the nurses bothered us (or were very quiet if they needed to check the IV machine, or vitals) during quiet time.  Channing and I were able to take 2 hr naps together every day, which was soooo nice for me :)

Jakey got to come and stay a night with me at the Ronald MacDonald House (Kindt slept with Chan) for one night, then spend the next morning at the hospital with us.  Everyone was sooo nice to Jakob and were very good at making him feel apart of things and needed. 

As you can see, the boys played and had a great time together.  They did get a little rowdy at times though, and Jakob has a hard time understanding Chans limits, and leaving Chans IV pole alone.  They were playing in Chans room, and hiding and just being goofy, when Chan goes "oh, cool medicine".  I look over and there was a pool of IV fluid on the floor, and blood coming the wrong way through Channings IV tubes.  I was a little worried and we called for the nurses.  They came in and fixed it up, got new tubes attached, everything was fine.  The nurses were nice and said that it was probably a loose connection, but I am pretty sure it was because Jakob kept running over the tubes with the wheels of the pole, and then stepping on it, and yanking it to make it loose.  We actually have a movie of this event (Kindt was filming the boys being goofy and crazy) but I can't upload it for some sad reason. 
Grandma Rani (our lifesaver for 3 weeks!!) and Ema came and picked up the boys and I that Friday morning after we were discharged.  We gave Grandma Rani and Ema a tour and had fun showing them all the things to do. 

playing in the wagons :)

comparing bracelets...every visitor to the inpatient levels has to have a guest bracelet saying they are allowed to be there and they aren't sick.  There are a lot of immune-compromised children on the floor that they need to keep safe.  Channing thought it was neat that Grandma and Ema had bracelets like him!

On our way back to the car, we heard about a party that was going on downstairs and decided to check it out.  It was so fun!  They had face painting, games, toys, and food!!  Each kid even got to pick a toy on the way out, and they were nice toys like games, puzzles, stuffed animals, playdoh, etc. 

It was a fun, uneventful (medically wise) hospital stay, and we are gearing up to do it again this Thursday. 

I am so thankful that there is such an amazing facility for my son to be treated in.  They really do a great job of making everyone comfortable and entertained.  Here are some more amazing aspects of the hospital...

- They have a family kitchen where you can label and store any food that you bring, or buy so you don't always have to eat hospital food.

- They have volunteers who bring in dinner many nights of the week for the families, and there is always something available to snack on or eat in the family kitchen.

- There is a play room for the kids, and a family lounge which has a TV and lots of games, so you aren't always stuck in your room. 

- They have gaming systems, movies, and books that you can use.

- They have volunteers who will give parents a couple hours break every day and take the patient and sibling to play (AMAZINGLY helpful!!). 

and I don't think that even scratches the surface of how great the American Family Children's Hospital is.  It truly is a great place to be (if you have to be in the hospital that is) and I am grateful for all the things they do to make it more comfortable for all. 

Channings Life

A child's life revolves around the things that are most frequently occurring in their life.  For Channing this means his Leukemia.  He constantly talks about his port, his Dr's, when his next appointment is, that he needs to go to the Dr on Thurs and get pokes, etc.  It is so strange when I go to check on the boys in the middle of the night and Chan will roll over look at me and say "I have a port", then roll back over and go back to sleep- this has occurred many times.  At first, this really bothered me because a little boy his age shouldn't have to worry about these things, or even know about these things.  But it is Channing's life, and talking about it all the time is his way of saying he accepts and understands that this is his life right now.  It is all of our lives right now. 

Last night my phone beeped (it usually just vibrates) and Chan looked around and said "we aren't at the Dr's so its not my IV, what is that beeping?".  Again, a normal beep and his life context brings him to something related to his Leukemia.

As we are walking through the store Channing will see soda and say really loudly, "Soda hurts my MeKemia".  At first I would glance around to see if anyone heard, and is giving us funny looks but now, I smile at Channing and say "you are right, I am glad you remembered that we need to do our best to keep our body healthy to fight the Leukemia".  He seems to really understand that mommy, daddy, and his doctors are trying to keep him safe and healthy and when we say he can't have something, or needs to take his medicine he will do his best to listen and do it without a fight.  He really is an amazing little boy, who is dealing with something that no one should have to and doing it willingly and with a smile.  I know that I have a lot to learn from him!

A Day at the Clinic In Pictures

I posted a few pictures on the post before with what we do in the clinic when we go but here is a fully documented photo journey of a day at the clinic. 

Height, Weight, Blood Pressure, Oxygen, and Pulse all taken.

 Once in the room the kids get to pick a sticker.  Then we put Chans stickers into his special sticker book (my kids are big into putting stickers on their clothes and I thought this would be a good way to keep his stickers).

Then the nurse comes in and gives him his hospital bracelet so they are always certain that he is given the right meds.  He loves his bracelets and gets really excited about them.

Then we wait.  We color on the chalkboard, watch cartoons, and play on the firetruck table. 

 Kris, the child-life specialist comes in and plays games on the IPad with Channing so he is distracted and not stressing out about the coming needle. 

Then the nurse comes in, nurse Abby (Channing loves her and talks about her all the time!), and does his pokes.  He doesn't even flinch anymore, he likes to watch it being inserted into his port, but it doesn't bother him. 

Then they draw blood, and give him VinCristine Chemo (IV drip over 1 minute) and after we are all done, about 3 hrs later Chan gets to pick out of the treasure box!

 Channing looks forward to the treasure box, and loves the things he chooses.  It is so nice to have him so well taken care of.