Wish Party

Make-A-Wish sends Wish Granters to your home when you qualify to discuss what you want for your wish.  Back in October (I think) we had the granters over to our home to fill out paperwork and discuss that Channing wanted to go to Disney World and meet Buzz Lightyear for his wish.  We also discussed that Jakob wished he could meet Woody (so Jakob didn't feel left out).  They then take care of all of the details for you, we didn't really have to do anything.  A few weeks before we were to leave on our Wish Trip the Wish Granters came to our home and threw Channing a Wish Party.  They brought presents for all of the kids.  Some of the things the kids got were a goofy stuffed animal, a princess tea set, all the Toy Story 2 figurines (Evil Dr. Porkchop, monkey barrel, Woody, Jessie, and Buzz Lightyear), and so much more.  They also brought balloons and cake and ice cream for all of us to enjoy!

While the kids were entertained the Wish Granters discussed all of our trip details, what time we would get picked up for the shuttle to the airport, what tickets we were going to be given, the check for our expenses, a packet of info for the GKTW resort and so much more info.  The Wish Party got the kids even MORE excited about our trip to Disney!!

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....