Stress

I wrote this post in Jan and am just now posting it.  It is really hard for me to be honest with my feelings, and post these thoughts for all to see, but I also feel that others going through struggles need to know they aren't alone in their thoughts and feelings....

Lately I have been struggling a lot with stress, and anxiety.  I did so well for the first year after Channing was diagnosed I thought maybe I would get through this without the anxiety and stress most mothers of cancer kids get.  I'm not sure why I thought I would be the one to get through it without the stress and worry, but I am really good at lying to myself and staying in denial.  Don't get me wrong, I knew how serious Channing's diagnosis was/is but it had all gone textbook, so I felt safe and comfortable.  I'm not entirely sure when the anxiety and stress starting creeping in and taking over.  It could have been when Channing went into the hospital in Aug for neutropenic fevers, or the multitude of ER visits, and specialists, or the fact that the one boy that we personally know who is fighting cancer relapsed.  It is likely a combination of all those things, just building on top of each other until one day I realized I was having a panic attack.  I struggle with going to public places.  I cringe when I hear someone cough or sneeze.  I keep hand sanitizer on me at all times, and use it more often then probably the rest of you put together.  We have cleaning parties where the kids wipe down their toys with disinfectant wipes - thats not normal.

Recently, we were in a store with all the kids and their was a walk in gingerbread house.  There was a cute table with cookies on it for the kids to eat while playing.  I cringed.  I didn't want my son to touch the cookies, or touch the house, but its not fair for him to not be able to do what a normal kid can do because he has a compromised immune system.  So, I took a deep breath got him a cookie that was buried a bit and let him play.  Soon after I realized i didn't have any sanitizer on me.  I started to freak out (internally, but still panicking).  I felt claustrophobic and started to shake.  I knew I had some sanitizer in the car so i rushed out and got it.  Then i told the kids it was time to go and doused their hands in sanitizer.  I couldn't get out of their fast enough.  It was eye-opening for me just how bad it is getting for me.

I feel like we take one step forward with things and then 3 steps back.  I find I am calling the oncologist constantly for re-assurance.  That is not like me, but i guess its the new me.  I am stressed about every little thing.  Every bump, bruise, cut, rash, stomach ache, head ache, ache in general I get scared.  I want to take him to the Dr. just so they can reassure me that Channing is going to be ok.  A few weeks ago Channing went to the ER 3 nights in a row.  I just needed that constant reassurance.  Thankfully, most of the Drs. are understanding and willing to listen to a crazy mom ramble and don't make me feel like a crazy mom.  But I feel like one.  I feel scattered, and scared, and stressed.  And I don't like it, I don't like who I have become.  I don't like what cancer has done to me, how it has changed me.  I have become reliant on doctors, I have become obsessive.  I feel like a basket case.  And that is not me.  I am calm, and capable and don't let things get to me.  I usually felt like why let something I have no control over control me.  I don't feel that way anymore.  And it is very hard for me.

Most of the time when people ask me how I am doing I answer them honestly, especially if I feel like they are asking me sincerely.  A lot of times I am ok, and we are doing ok.  But there are times we aren't and I feel like I am falling with nothing to catch me.  I feel like no one can understand or know what I am going through.  Everyone's struggles are unique so I know that I am not alone feeling this way.  It's just really hard at times.  REALLY hard.

The things that have kept me more sane are knowing that no matter what I could call so many people at the last second and they would jump up and ask what they can do to help me.  So many people already have and will continue to do that.  I am so grateful that I don't have to add that as a stresser.  

Arizona

I went to Arizona this past weekend to go to my Grandmother's funeral.  It was a very emotional experience for me, in the expected way and in a very unexpected way.  Funerals are very difficult for obvious reasons. My grandmother will be missed.  She was very loved, and I have a lot of fond memories in the past years with her.  What I wasn't expecting was the onset of emotions related to Channing's Leukemia.  We were in Arizona exactly 2 years ago one week before Chan was diagnosed with cancer.  Arizona is the last place that my baby had his innocence before it was so forcefully taken from him.  Arizona was the last place that my son played without constant santitizing, without fear of germs, without any cares in the world beyond the now.  Arizona was the last place I was a mostly carefree mother - I didn't carry sanitizer all the time, I didn't cringe when my son would touch something other kids touched, I didn't have to worry about eating 2 hours before bedtime so his food wouldn't interact with his meds, etc.  I didn't expect to feel so emotional in Arizona.  While it was a very hard thing going back for the first time since diagnosis, I am so very grateful that my kids and I got to have such a great, positive, carefree visit with all the family the week before our life forever changed.  I guess I still never know just when the emotions of Channing's Leukemia will creep their way to the surface. 

Updates - Cardiology, Dermotology, and ENT

My son has SO many specialists... ENT, Dermatology, Cardiology, Oncology, and of course the regular Pediatrician.  Chan has had a lot of medical stuff happen in the last few weeks so here is an update on it all.

Channing has had a full body rash for about 3 months now.  It causes him discomfort and itches a lot.  We have been treating it with cortisone cream and benadryl when it flares up.  On Wed (the 2nd) we went into Chans pediatricians office and he referred us to a dermatologist.  While their they noticed that Chan's heart was beating irregularly and slowly (60 bpm).  They did an ECK on him and it showed that his rhythm was abnormal, and that his heart was beating abnormally slow for his age.  We have known that he has a slow heart rate but it never really seemed to be an issue.  Chan's ped decided to send it to a Cardiologist in Madison to look it over.
On Friday (4th) we saw the Dermatologist and were given a more aggressive topical cream that will hopefully improve the rash.  After two weeks if little or no improvement is seen then they will take biopsies of the infected areas to test.  The Dr.  thinks it is a cephalosporin allergy which means Chan would be allergic to any cephalo- medicine.  Cephalexin,  and cefdiner being ones he has had more recently with his more recent ear infections and fevers.  We will know more after he speaks with Chan's oncologist and at our appt in a few weeks. 

This Monday (6th) we went to Madison to see a Cardiologist about Channing's heart rate.  This was in response to a very stressed out mother on Wed evening calling the on call hem/onc and asking them a bazillion questions, and then again calling on Thurs to talk to our regular onc about the situation.  They then got in contact with the Cardiologist and set up an appt.  Tangent:  I am SOOOO grateful I can call anytime I have questions, or am stressed, or worried.  Anyway, Everything at the Cardiologist looked good.  The echo cardiogram showed that in function and size the heart was doing exactly what it is supposed to, and that it matched his echo from diagnosis (almost 2 yrs prior).  That was very reassuring.  The Cardiologist also said that in order to have an average heart rate kids have to be all over the spectrum so Chan is just on that lower end.  I asked if there could be any reactions from a medication and the Dr. said that zofran (his anti-nausea med) is the only one that could possibly cause slow heart rate.  They still wanted to watch his heart rate over 24 hrs in a 'normal' setting so they put a monitor on Chan and he wore it for 24 hrs.  Chan was actually sad when he had to take it off.   Hopefully we will know the results of that in the next week or so. 

Chan has a surgery scheduled on the 18th of Jan for ear tubes and adenoid removal.  They are doing it at the same time as his spinal chemotherapy so that we only have to do one general anesthesia as opposed to a sedation and anesthesia within a few weeks.  The hope is that the tubes will help with the ear infections he has had a multitude of lately and that will then stop the inpatients.  The last 2 inpatients were due to neutropenic fevers related to ear infections. 

Yesterday, Chan had his pre-op appt for his surgery next week and his heart rate was up to 78 bpm.  I thought a bit about this and realized that Chan hasn't had any Zofran since Monday morning about an hr before his Cardiology appt.  So, today, I did a little bit of research on Zofran and the possibility that it could cause low heart rates.  There is a very low possibility of over time Zofran causing QT prolongation, which could be what Channing is experiencing.  I called Chan's oncologist and asked and the NP said that they have heard that it could cause it but they have never seen it.  We then discussed other options for nausea control since I don't feel comfortable giving Channing Zofran anymore.  I feel a WHOLE lot better about it all now.  I feel like there is a big correlation between zofran and Chan's heart rate - I had given him zofran an hour before his appt last wed when they noted the heart rate and an hour before his Cardiology appt.  And had not given it to Chan in the 24 hrs before his pre-op appt where his rate was normal.

And randomly shoved into this post here are some statistics I found on things Chan has experienced...
You never worry about those low statistics until it happens to you.  Now, I will look at all of the .03 % experience on all of the labels of Chans drugs...
The probability of someone having a heart reaction to Zofran is very low...
The probability of having identical twins - .03%
The probability of a child between 0-20 developing Leukemia - .033%
The probability of both twins (one with Leukemia) developing Leukemia  - 20%
Here's hoping that the statistics start looking in our favor especially when it comes to Jakob...

Inpatient Dec 12-14th

Kindt took Channing to urgent care, Wed the 12th, because he was being super whiny and annoying. Seriously, his only 'real' symptoms were that he was acting out and having to go in time-out constantly. He was diagnosed with a double ear infection and sinus infection.... At least there was a real reason for him being such a goober.  

When they got home Channing was exhauted and climbed right into bed at 7pm.  I went in a checked on him a bit later and he felt warm to me.  I checked his temp and he was 102.7 :(  I called his onc and let them know we were headed to the ER.  At the ER they did a CBC and his counts were so low that they thought it was a diluted sample.  So they re-did the CBC (it takes an hour to process each time).  And sure enough they were really low.  Which meant he was neutropenic and had a fever which is an automatic inpatient stay.  Since we were already in the ER they wanted to take Channing up to Madison in an ambulance.  Not entirely sure why, but I believe its because its easier for them to transfer the patient then discharge and re-admit, and I would have to sign a waiver in case in my transport something happened. 

Chan was a little nervous about the ambulance ride but enjoyed it after the first 20 mins or so. 

I was really worried I was going to get car sick because riding sideways in a big truck that you feel every bump in can do that to a person.  Thankfully, I didn't.  It helped that I was worried about Chan and the EMT kept me talking the whole hour ride.

We arrived at our room at the Children's hospital at 2am.  Then hooked him up to an IV with antibiotics and fluids and we had drs. and nurses come in for the first hour then we slept.  Chan and I always share a bed :)

Sadly, we were in isolation which means Chan can't leave the room.  We did lots of crafts, and watched lots of cartoons.  Also, a school teacher came in and worked with Channing for a half an hour both Thurs and Friday morning.  Channing enjoyed it and I was able to have a little time to myself. 

On Friday (14th) at rounds (morning meeting with all the people who work with Chan and the parents) they decided that if all went well through the day we could be discharged that evening.  Everything was good, white counts had risen, no fevers since Wed evening, and all cultures clear of bacteria so we got to go home!

Now, since Channing has had 2 recent inpatients due to ear infections we have decided to have tubes put in his ears. 

Overheard

Jakob:  I'm getting sick...
Channing:  Maybe you are getting Leukemia.
Jakob:  Yeah, then I can go to your hospital and have lots of fun.
Me:  We don't want Jakob to get Leukemia, Leukemia is not fun.
Channing:  But my hospital is fun, I love my hospital.
Me:  But you get sick and get pokes there...
Channing:  I don't care what they do to me there, they can poke me all they want, and give me lots of yucky medicine but its still fun.

I am grateful that Channing has such a positive attitude about it all, and that we have been able to keep the whole thing a positive experience but it is really weird to listen to my 5 yr olds talk about Leukemia in such casual tones. 

Heartbreaking...

I only know one family personally who is fighting Leukemia.  They have a sweet little 4 year old boy that they lovingly refer to as "Superman" because of how heroic he is with his battle against cancer.  Yesterday their worst fears came true - Austin has relapsed.  His Leukemia is back.  He needs a bone marrow transplant to make him better. 

I have been having a very difficult time since learning about this yesterday afternoon. This family is the only family I personally know who is fighting Leukemia like Channing. It hits too close to home and all the fears and anxieties from diagnosis are flooding back. I can only imagine a small piece of what this family is enduring right now.  I am coming to understand just how helpless people around me must have felt when Channing was diagnosed with Leukemia just last year. The only thing I can think of doing to help this family is by helping them find a match.

Please consider joining  www.bethematch.org. Please also share this link. We need more people willing to be donors. It costs NOTHING if you are between the ages of 18-44. It's easy - you review the info on the page and make sure you fit the medical criteria, then you submit your info. A kit will be sent to you to swab your cheeks with a q-tip and then if there is ever a match they will contact you to do further testing.  Look through the website to see if this is something you can do to help.

I know that it is a scary thing to think of the possibility of having to get bone marrow removed. My 5 year old son has had a bone marrow biopsy at least 3 times, and he gets needles inserted into his spine every 4 months - and he hasn't complained once about pain in his back.  If Channing can do this to save his own life, we can do it to save someone else's.  

Birthday Donation

For the boys 5th Birthday party instead of gifts we asked the guests to bring small non-gendered toys and games, arts and crafts kits, markers, playing cards, bubbles, puzzle books etc for the New Diagnosis bags for Badger Childhood Cancer Network.  These bags are given to families at Diagnosis to help lift the burden a bit.  There is information books on cancer, blankets, toiletries, and things to entertain the family during the hospital stay.  To me it felt like Christmas seeing all these new fun things in a bag for us while my son was in surgery getting his port placed, it was like a bright light in the midst of all the darkness. 

Only a portion of the generous donations from friends!

The boys dropping off the big bag of items at BCCN

BCCN was very appreciative of the boys and their friends donation.  I am grateful we were able to give back in a small way to an organization that has given our family so much support!