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!

Pneumonia and Update

The Monday after Chan's neutropenic inpatient we went to do Chan's blood work to see if he was safe to be out in the world again.  We got his counts later that afternoon and he was back up in normal range.  I was excited because my mom was in town and we had lots of fun things planned.

Monday evening (Aug 20) we had an appointment scheduled with Wish Granters from Make a Wish (they coordination between the families and the local Make A Wish office).  They came with a box full of new fun toys for the kids.  The kids were sooo excited, it was like Christmas!!  It kept the kids (along with Grandma and Aunties help) entertained so the Granters could sit down with Channing and ask him what things he liked to do, eat, play, read, watch etc.  Channing was being shy and would only whisper the answers in my ear.  I noticed Chan was warm and was acting a little more lethargic them normal, but wanted to wait until the Wish Granters left before I checked his temperature.  Channing wants to meet Buzz Lightyear, Woody, The Pig, The Dinosaur, and Jesse Girl for his wish.  He asked to go to Disney World in May to meet them for his wish.

After the Granters left I checked Chan's temp and it was above the 100.5.  I called the on call Hem/Onc and we were once again sent to the local ER.  Jakob, and Grandma joined us.  Thankfully after Chan's last inpatient they gave us a few pediatric port needles so the local ER could do the port culture.  They accessed Chan's port and drew the blood and culture.  Then they took Chan to do an x-ray.  I figured it was normal procedure and that nothing would come of it.  Unfortunately, that was not the case.  There was haze on his chest x-ray and Chan had pneumonia.  They gave Chan some IV antibiotics, and were waiting to hear back from the on call Hem/Onc to see what they would like us to do.  I assumed, as did the ER Doc, that we were heading back up for another inpatient.  It was after midnight and I was exhausted and feeling defeated.

There have really only been a few times (after initial diagnosis/the first month) that I have felt defeated.  I felt defeated when Chan's first 2 inpatients were postponed.  I felt defeated when I was 9 months pregnant and Chan's last inpatient was postponed.  I felt defeated at his last inpatient when they said that we couldn't go home on Thurs (thankfully Chan's regular Doctor saved the day!).  (I guess most of my biggest feelings of defeat are based around an inpatient...).  But at midnight in the ER thinking we were going back up to Madison while my mom was here, and after just being inpatient the week before, I felt defeated.  There was nothing I could do about it, but I wasn't very happy about it.  I realized then that this is the way it was supposed to be during the first 6 months after diagnosis.  We were 'supposed' to have multiple unscheduled inpatients.  We were 'supposed' to be in and out of the ER with illness, and fevers.  Most children do.  The nurses still talk to me about how they can't believe that it all worked out with Channing's last inpatient and Ellery's birth.  For most its not like that.  For most children with cancer they are in and out of the hospital, in and out of the ER just waiting around every turn for something to change and force them to go back in.  We have been blessed.  We are the lucky ones.  I thought of the few little ones that I know with cancer and I know that they have dealt with that.  I sometimes feel like I live in this weird dimension.  I don't quite fit into the 'real world' but I don't quite fit into the 'cancer' world either.  Our experience has been nothing compared to a lot of kids with cancer.  Maybe its some sort of survivor guilt type thing, I don't know....

Anyway, enough of my tangent ;)  Around 1:00am the Doctor came and and she said that as long as I felt comfortable with it the Hem/Onc would let us take Channing home because his counts were good, and he looked so good for having pneumonia but if anything changed to call right back.  I was soooo grateful.  We got home around 2 am and were all pretty exhausted.  We took it pretty easy for the next 2 days.  I was afraid of making any plans for the next week because I was worried that Chan would spike a fever and we would be back to inpatient.  Thankfully, Channing seemed normal pretty much the next day and never did spike another fever.

At last weeks port flush and physical all signs of Chan's pneumonia were gone.  And Chan has been acting just fine!

And today.... Chan and Jakob started their first day of Kindergarten!!

I am worried about all the germs, that they won't wash their hands enough, and I'm worried about the fact that the boys are in different classrooms so more possible areas of contamination, but this is life.  This is what it should be.  My boys are growing and learning, and as much as I would like to keep them safe and isolated forever I can't.  Now, I get to have some time with Ema and Ellery every day (what are we going to do???).  It will be good for me and Ema to have some special one-on-one time!