16th and Final Spinal Chemotherapy!

Channing had his 16th and FINAL spinal on May 2nd.  It was scheduled for April 11th, but had to be postponed due to illness.  It has been an emotional few weeks for me.  I got ill the Sat before this last one and was so scared that Channing was going to get sick and postpone it even more, but thankfully we were able to do the sedation and this part of his chemo is done!  He still gets oral chemo, and a couple more port chemos, and another round of the dreaded steroids but we are getting closer to the finish line.  Which is actually very scary for me.  Part of me wants to keep giving him chemo because I know that it is keeping the Leukemia away but I know that there is an end date of chemo for a reason and that Chan will be ok, but there is still the lurking fear. 

Every spinal chemo but two (I think) we have had nurse Judy.  I LOVE Judy, I count her among my friends.  I recently found out that no one gets the same sedation nurse more then a few times, but that when Judy saw our names on the schedule she would fight for us :)  Judy was the nurse in the room when Channing was diagnosed and her sweet, peaceful and unimposing spirit was a huge comfort during that time.  As we listened to the Dr.  tell us that our son had cancer Judy sat quietly next to a sedated Channing running her fingers through his hair and monitoring his vitals.  She told me on Thurs that she knew there was going to be something different about us.  She said she observed us as we were told the news, she was surprised that I noticed the tissues in the Oncologists hand when the Onc walked into the room to tell us the news.  Judy said she was impressed that we waited until the Onc left the room before we broke down, that we took the time to mourn and cry, and that she remembers me sitting on Kindt's lap and crying together.  Then she remembers me standing up, composing myself and saying, 'ok, now what do we need to do?'.  She silently watched us call our family and tell them the devastating news, and make plans for Jakob and Ema.  Judy told me she was impressed that we took the time we needed, then got right down to business to figure out the next step.  We had a long discussion about it while Chan was sleeping off the sedation this last time.  It was therapeutic to discuss our memories of that day.  I will miss Judy and I's long conversations while Channing slept.  For 14 long days over the last 2 years we have discussed anything and everything.  She treated my son like her own child.  She treated me like a friend.  I will never forget Judy and the peace she gave me.  I am so grateful to amazing nurses like Judy.

Since it was Channing's last sedation I watched.  I had never stayed in the room before.  I always left after Chan was asleep to go grab lunch, but I decided to watch the last one.  It was a little weird to watch a procedure on my baby, but I think I have been desensitized to watching him undergo procedures and pokes and what not.  I was watching a procedure and not really thinking about the fact that it was my child that the procedure was being done on.  First they pushed Atropine (dries up the mouth to make the procedure safe, Chan had a bit of a red throat so they wanted to be more cautious), then they did the Fentanyl  (a pain reliever 100 times more powerful then morphine) and Propofol (general anaesthesia).  They put Chan on his side and he actually started to wake up a few times so they gave more propofol to keep him under.  Then Dr. Patel made sure Chan was in the right position on his side, cleaned off the area really well with the red Betadine, then stuck a needle slowly into Channing's spine.  The needle goes through the membrane and into the fluid that is around the spinal cord.  Then the needle is removed and the tube stays in place and then spinal fluid drips out into a diagnostic tube to test for any lurking Leukemia.  This part was a surprise to me, I had no idea that this was a diagnostic and administering procedure.  I just thought that he was given the chemo and that was it.  It makes sense though that they take out the fluid they are going to replace with the chemotherapy.  Then they place a syringe in the tube and slowly and uniformly push the Methotrexate into the spinal fluid.  Once that is completed they take out the syringe and tubing, clean up the Betadine, and put on a band-aid.  The whole procedure takes maybe 5 minutes start to finish.  Then we wait for Chan to wake up!  Sometimes I would pick on Chan while he was sleeping, like pick up his hand and drop it, or tickle his feet, or open his eyelids, haha.  We needed to wake him though and sometimes it was the only way :)  Mostly though, I would just talk with Judy and watch my sweet baby sleep so peacefully. 

When Chan was diagnosed Kindt asked for a copy of the entire study protocol and we were given, a bit reluctantly, a binder with 250 pages of info in it.  Some of the pages are dedicated to each drug and their risks and side effects.  I was reading the side-effects of Methotrexate when given into the spinal fluid and thought I would share with you them (though if you read the possible side effects of any drug you would be stunned).  I will star the effects we have noticed on occasion with Chan (never serious though, just a small side effect)
Likely side effects:  Nausea* and Headache*
Less Likely:  Difficulty thinking or learning, confusion, vomiting*, rash*, sleepiness*, extreme tiredness*, unsteady walk*. leg pain*, drop in red and white blood cells and platelets (which can make you feel tired*, weak*, easier to get infections*, and cause easy bruising). 
Rare: seizures, partial temporary paralysis, severe damage to brain tissue, severe allergic reaction, bleeding into space in spine where injection is given

Sometimes I am taken aback by the fact that we are pushing poison into my son intentionally.  I know its the only thing we can do, but it still feels odd.  I am also amazed by the fact that all of these drugs and medications have been found to kill Leukemia.  I am grateful that their are people out their who are able to figure these things out, they have saved my son's life.  I am also grateful that I never have to watch this procedure again, that we don't have to push the Methotrexate into his spinal column again (he still gets an oral MTX though).  Our journey with chemo and cancer isn't over yet, but we are getting closer to the finish line!!

Guilt

This post is a little exposing of my inner thoughts and feelings.  It is hard for me to be so honest in such an open way but I have been told that I should put everything out there so here goes...

I have been feeling guilt lately for lots of reasons.  Most, I realize aren't fair for me to feel guilt over but I still feel that way.  First, I feel guilt that my son is ok.  I know this sounds crazy, and believe me I am SOOOO very grateful that he is ok.  I am so very thankful that our journey with cancer (so far) has been 'easy' compared to so many other children facing this horrible disease.  The emotions aren't 'easy', the stress isn't 'easy', really none of it is 'easy', but my baby is ok.  He is doing well, he barely understands all that he has been through, and I don't think he has any idea how bad cancer could have been.  Which was always the way we wanted it to be, I fear for the day that my son realizes all that he has been through, when more of his innocence is shattered.  This isn't the case for a lot of children with cancer.  A lot of families have so much more stress, appointments, chemo, hopeful moments then huge setbacks.  Huge, scary, no-clue-what-the-future-holds setbacks.  My heart breaks for these families.  I hurt for these families.  I feel so strange going on with my 'easy' life when they are in the midst of such pain and tragedy.  I remember the feeling of the world going on around me when Channing was first diagnosed, and some families have that feeling for years.  I feel so unfair trying to talk to them, reassure them, and mostly cry with them because my son is ok, and theirs is not (right now, because he will be, he better be, he has to be!!!).  I feel so confused that my prayers were answered with my son, and other families prayers are still waiting for their answer, no idea what the answer will be.  Again, I am so beyond thankful that Channing's journey has been what it has been, but these thoughts and feelings and questions are all still there.

I feel guilt that we are being given a Wish Trip.  I feel that maybe we don't deserve it (I know that everyone will reassure me and tell me that we deserve it and all, but this is how I feel).  Again, I am so VERY grateful that there are organizations that understand the constant stress, anxiety and fear that goes along with life-threatening diseases but I think I am in denial that yes, Leukemia is life-threatening.  I don't think I ever truly let myself think that, because that wasn't really an option.  Channing was going to be fine, just like Ellery wasn't going to be born until after Channing's last inpatient (Channing's last inpatient was 5 days after my due date and it was a long shot, but just as I needed it to and expected it to I didn't have Ellery until after Channing was released from his last inpatient).  Since we have had an 'easy' road comparably to others on the childhood cancer journey I feel so unworthy of accepting this trip.  We are accepting the trip, and I am so grateful to take the trip - I need a vacation away from the daily stresses of life with cancer, but I feel that everyone needs a vacation and that people are judging me because again, our journey has been 'easy' comparatively (Again, I know that many will give reassurances here too, but this is just how I feel). 

I feel guilt over my daughter.  My sweet, crazy, independent 4 yr old who hasn't known a life without cancer.  She thinks its normal to get pokes all the time, she thinks medicine can cure anything even the smallest of owies, she thinks its normal to have a Port, she thinks its normal to have sanitizing parties.  She has also lost a bit of the innocence of childhood.  I feel guilt that I have missed out on the most important years of learning in her life.  Discipline for her has not been consistent, she has lived with a mother so consumed with her older brother that she has fell the the cracks.  I didn't do pre-schooling with her at all, something I did with her brothers.  I feel guilty that she wasn't potty trained until close to 4 because there has been no consistency in our life, and when there is I am just too physically and emotionally exhausted to take on more.  I feel guilty that my kids have a second, third, fourth homes with different families that so willingly have accepted my kids into their home for every appointment Channing has had, people that I can never truly thank enough for their help. I feel guilt over Jakob, who has been known a lot as 'Channing's Twin'.  Who doesn't understand that mommy spends more time with Channing because he is in the hospital, that Channing gets all of these things because he is sick.  I can't count the many times Jakob has said he wishes he had Leukemia.  My heart breaks every time I hear Jakob say that.  He doesn't want it, no child should ever have it, but he sees all the cool things Chan gets and doesn't understand how truly terrible cancer is.  All of my children have lost some innocence and I feel guilty about it, even though I realize that as long as I do my best that is what matters. 

Don't get me wrong here, I know just how hard this journey has been for me, I know just how deep into depression I can get from the stress and worry.  I know how hard it is to make plans because I never know when the next fever or ER trip is.  I don't think anyone but my mom is actually privy to just how much I am affected every minute of everyday by the stresses of cancer, just how many times we have been to urgent care or the ER, just how many rounds of antibiotics Channing has had.  How I joke that we are 10 days on antibiotics, then 5 days off until we are sick again (which sadly has been more than true this winter).  How debilitated I get when someone in the home gets ill, because I am soooo scared that Channing is going to get sick, that he will be postponed again, that maybe this is the time that he will be inpatient, or worse.  How frightened I am whenever Jakob has any sort of ill symptoms that maybe this is the time that we will have a second child with a life-threatening illness.  I try not to let these things consume me, because they could, and some days, weeks they do, but I am not sure this guilt will ever go away.  For now, I will just be grateful, and count my blessings, and pray for miracles for others.  I wish I could do more....

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.