Tuesday, March 29, 2011

WARNING: If you dont want to hear me complain dont read this. Today was horrible.  I just want to start off by saying that I hate clinic.  I dont want to sound mean but its true.  I am so tired of all the rude dirty looks I get from the nurses and staff.  Every time I ask if we can go in a room I always get the same response, a rude sounding "Why?"  with a look like they think Im crazy and then they seem so put out when they have to ask the charge nurse if I can go back to a room.  Today I was told I couldnt and that I HAD to go to the infusion room.  This room is where kids usually go to get chemo.  Its just a bunch of chairs lined up with IV poles.  I just cant do it.  There is always someone back there coughing and Im just not ready. Today was already a rough day for me because I was so anxious about this new phase and even though I was visibly upset they still said I had to go back there, they have to keep clinic "flowing"  They didnt even attempt to try and make me feel like they cared.  I had to ask to two nurses to get the charge nurse before she even came back, and when she did I got the same rude looks.  She said she would try and work something out and never came back.  Thank goodness for our oncologist (Dr. Lemons) it only took seeing the look on my face to get us a room.  Im am so grateful to that man, he has helped me out so many times when NO ONE would listen to me.  No one there knows what Skyler has gone through and I when I try to tell them that the reason Im so nervous being back there is because of what he has gone through, I dont get shown an ounce of compassion.  I get the response "Everyone here has gone through alot"  Of course I know that lady!  And I also know that just a few months ago my son was laying in the PICU on deaths door so cut me a break!    Im not trying to take away from what other kids have gone through, every child that has cancer has gone through alot, its hard and devastating on everyone.  What I am saying is please respect my situation and the fact that right now at this point in our journey I just cant do the "normal" routine.  I have heard that for some families, coming to clinic is a good experience and in a way its like family, but not for me.  For me PICU is our "family" they saw what he went through and they care.  I wish some of their nurses were up in clinic so I can be shown at least a little respect.  My mom went with me today and she couldnt believe how I was treated.  You would think that of all places the oncology clinic would be the most understanding.  I just want to show them a picture of Skyler when he was really sick and say "THIS is why Im so afraid of germs right now!"  Sorry I know you dont want to hear me complain.  I know that things can always be worse.  I really am grateful for where we are now and that we can actually go to clinic for chemo instead of being inpatient.  Normally I can handle the "looks" because I just dont care what people think about me anymore. This is the only way I know how to take the best care of my son and it works for us, but today just pushed me over the edge.  I think alot of it had to do with already being a nervous wreck to begin with.  Ok Im done complaining, now on to Skyler.

Today Skyler started Delayed Intensification.  He received Vincristine and Doxorubicin.  Doxo is one of the new drugs in this phase.  We were going to just start off with half a dose and see how he responds to it, but Dr. Lemons decided to go ahead with the full dose today.  He is hopeful that since he has done so well these past few months that he will do well with this.  I hope he is right.  After he got his chemo we went down to RTU for a bone marrow aspirate and LP.  He had such a hard time today not being able to eat or drink anything before the anesthesia.  I kept having to remind him that he could get a red slushy and Popsicle when he was done.  Today was pretty rough for him.  As me and my mom were out in the hall waiting for him to wake up in the recovery room, I heard him start crying really loud so I hurried back there.  He was really upset as he was waking up.  He kept crying and saying he felt dizzy.  He hasnt ever woken up like that before.  Once he was able to get his slushy, Popsicle and Cheetos he did better.  He still was dizzy for awhile though.  Luckily he was able to get his chemo before we went down to RTU so we were able to just go home afterward.  When we got home he was doing really well.  He was really happy and had tons of energy.  He was also eating great.  About an hour ago though he started complaining of a headache and also said his back was sore (where they took bone marrow)  He is sleeping now so hopefully when he wakes up he will start to feel better. Good job today Skyler, I love you so much and Im so proud of you!!

     This is part of the infusion room.  Soon after we took this all the chairs filled up.

Thankfully Dr. Lemons got us into a room for his chemo

This is the doxorubicin

Skyler had this look alot of the time.  He was not a happy camper today because he was so hungry and thirsty.

If you can see in the back the anesthesiologist is pushing the "sleeping medicine"  Skyler got really scared at this point.

At least he was able to go to sleep in mommy's arms

Here is Dr. Lemons getting the chemo ready to put into his spine.  I actually hate this picture because seeing his little feet laying there makes me sad.  I wish I could hold him the hold time and tell him everything will be ok.

Here is the anesthesiologist giving Skyler oxygen

They are prepping his back right here for the poke. 

He was one sad little boy waking up.

He was alot happier though once he got all his goodies


Annie said...

My heart just breaks for you looking at these pictures and what you have to go through with Skyler. That is so sad and terrible that the nurses would treat you like that. I think sometimes when they work in an area so long that some of them lose their daily compassion, which is so sad, and makes it so hard on patients like you guys who just need a good experience. I'm glad you have a good Dr. who will take a stand for you. My prayers are with you.

Anonymous said...

I am so angry that you were treated that way today. Your family has just been through so much. Skyler is so brave. Extra thoughts and prayers tonight.

Ana Rodriguez said...

You did the right thing standing up for your son, good for you!!! Delayed intensification is hard but not as bad as the induction phase was with the month long dex, man I hate that drug. My daughter is 8 months into maintenance and life is a little more normal now. I hope all goes well for Skyler and I will keep him in my prayers.

Beth.. One Blessed Nana said...

crystal - thank you for posting these pictures. it really helps to put it into perspective for us. i am so sorry that you have to watch your son go through this. it breaks my heart but I know that our sweet Lord is watching after you both!

love to you and prayers for his healing continue always!

amber said...

Crystal and Skyler,

I don't honestly know how I came across your blog but I am so thankful I did.

I think of you every day and send as much love and prayer your way as possible, I wish I could hug Skyler and take it away for him. He reminds me of my nephews and it breaks my heart. Stay strong, you are sure a good momma which he needs.

Keep writing, it seems to help. Much love to both of you,

suzie said...

Some people just DO NOT GET IT do they????!!! They're sooooooo thick minded and truly means they hvn't even wlked not even a step in your shoes...bottom line! Crystal......you are doing the right thing.....KEEP ON KEEPING ON with what your doing and how ur doing it ALL.........YOU ARE the RIGHT one....they ARE the WRONG ones.....if anyone should b given "those looks" its them.....oh..it just urks the crap out of me when those ppl in the field of medical (the ones we go to for solace/help when sick) act heartless......they are ignorant ppl who truly do NOT understand! I'm sooooo happy u are the way u are for ur baby's sake....you have to be....the only way to be! Its his whole world! I just think you both are just simply amazing and I can't tell u enough how EXCELLENT job ur doing and being thorough is the best and smartest way!
Prayers from Az, *suzie

Misty Jo said...

Crystal I am so sorry that you have to go through that at clinic. I don't blame you for being mad. I hope Skyler does great during this phase! You and Skyler are in my prayers:)

Anonymous said...

Crystal,, you are doing the right thing,, you stay tough and strong, no one will ever know what you have been thru, just know that you are doing what a mamma bear does,, and that is to protect her baby at any cost!!
Crystal, thank you for letting us see some of what you go thru,

you are a wonderful mom, and skyler is the bravest boy ever!!

zachs mom

M-Cat said...

Please contact patient relations at PCMC and let them know how you were treated at clinic and your concerns for Skyler right now.

The last thing you need is judgemental crap from the nurses who over time become desensitized to the awful situations that these children and their families are in.

Intermountain NEEDS to know these things and get this kind of feedback to continue perpetuating our mission statement.

Continued prayers for Skyler and your!

Tukuafu's said...

Oh honey.. I haven't ever been in your situation, but being a Mama bear is NEVER a bad thing! You have to do what you have to do! You are amazing and I hope you know that you are such a fabulous example of what every mother should be!

Anonymous said...

I think you should print out a bunch of the pics from when Skyler was so sick and write a little note to the nurses to explain where you're coming from. Maybe they would have a bit more perspective the next time you're in clinic. Those pics could explain way more than any words could.

My little boy has cancer, but he has not gone through anywhere near what your son has. I have had my son in clinic before, where he was the one coughing and hacking and I felt guilty and asked to be isolated for that reason. I would sure think the nurses would understand you wanting to protect your son, but perhaps a visual aid would help them remember to have some empathy.


Steph said...

I couldnt imagine going through this and the strength you have to have to help your son everyday.
I found your blog while looking at the bountiful triathalon site.
I am doing a project with some youth and was wondering if you or one of the families you know would benefit from it. We are looking to do a room makeover(a child room) for someone who is struggling. We would love to hear back from you if you do.

Plain Jame said...

I'm sorry it's not a pleasant experience to go there. I'm sure it's challenging to have to face people that have no idea what you have been through.
Skyler sure is a fighter - and it breaks my heart too that he is still having to endure so much. BUT the great news is, he is enduring it so well! Skyler is a trooper and he is a hero. I think about him all the time, and even though my girls don't know him in person, they see his pictures on the blog, they pray for him, and they know that he is getting better. It's hard for me to not think about Ben and how he must be close by Skyler every day. I know that he has a whole team of angels nearby all the time!

Amy Stewart said...

Im so sorry it went so crappy for you guys..I really think next time you should take a picture of when he was at his worse and say this is why we want our own room, you have every right to do whats best for skyler, he is your life..
Love you both

Sue Mullen said...

You are such a strong family! I look forward to hearing about Skylar's progress and recovery!! He is an amazing little boy!! And you are an amazing Mommy!

Clinic takes some getting used to, every family goes through it!!! They should know that and also remember that they have not been in our shoes!

My daughter is in LTM for ALL. http://www.caringbridge.org/visit/kailey

Keep up the GOOD FIGHT!!!

kate said...

Oh Crystal,
You are such a great mommy! I am so sorry the nurses treated you that way. I think sometimes nurses see so much that they build up walls and lose touch with their humanity.They do need to be reminded that these are people's babies and they need to think how would they react if this was their baby? I am a nurse and I have seen this type of thing time and time again, they are not bad people, just people that need to be reminded that if they want to be a nurse, and help in the healing, they need to open their hearts, and not become so closed off. Again I am so sorry for how they treated you. I would talk to Primary's and let them know how you were treated and how you felt.
Much love and prayers to you and Skyler.

Anonymous said...

Perhaps at times it's also important to remember that almost every child in clinic has gone through the PICU and near death experiences. The nurses know this and are still sensitive to the needs of EACH child in clinic and have to do what's best for ALL of them. All of the children are special and need special care, there's just not enough room to keep each one secluded. It's important to try to remember other people are going through the same thing you are at the same time. The nurses are desensitized, they're trying to be fair to everyone.

Tammi said...

You go momma! You do everything you need to do to protect your child. You know best.

Anonymous said...

You are such an amazing mother. I can't imagine everything you have been through. Skyler is so strong. He fights hard to get through everything. I pray that this round of chemo goes well for Skyler and that it isn't too hard on his little body. You are such an inspiration to encourage people to keep moving even when things are extremly difficult.

Kristin said...


I know we talked last night, but after reading this, I really think you need to talk with someone. Dr. Lemmons is head of oncology, did you tell him how badly they are treating you? If you haven't already, he needs to know and have a talk with his staff. Like Melissa said, you should also contact patient relations. There is no excuse for that kind of treatment when you are there to start one of the most difficult phases and have been worried sick about it already. I thought about it all the way home last night and now reading this today I am just furious for you.

Hope your little man is feeling okay today.

Kristin said...

And I would disagree with the anonymous commenter. Everyone has not been through the things Sklyer has been through. Some of them have. Have they all been through a lot? Yes. Mine included. But I would not have hesitated for one second to give you and Skyler my room at clinic and done my entire appointment during any one of our treatments in infusion so you could have a room, and I don't think I am alone in that. He's just been through more than most. I love the staff there, they have always been good to me. But I have not been in Crystal's shoes and am upset that they would not be more sensitive to this particular situation. Thanks goodness Dr. Lemmons is.

Laurie said...

Kristen thank you for this comment. Please remember this is a place where Crystal has been able to express her feelings. If she has a bad experience, I want her to share it and write about it and move on. Our precious
Skyler along with all the cancer kids have been thru so much. Skyler has looked death in the face and survived! Her experience that day at clinic was not overblown. I was there and she was treated really badly by some of the staff. It was uncalled for and greatfully Dr Lemons knows Crystal,were she's been and what she needs to help her thru this. We can't praise that man enough and the dr's and nurses in the picu. They did everything possible to save Skylers life and we can not thank them enough. They are truly instruments in God's hands. We have a very long journey ahead of us and are very grateful to all of you for your love and support. We are grateful for the drs and nurses still helping us fight this battle, we are grateful to all of you for helping crystal thru the bad and the good times. Your comments and support are priceless. To the kids and family's fighting this battle with us, we love you and pray for your children.
Crystal Mom