Good news....the steroid cream is really helping his psoriasis. It is looking so much better already and it only hurt him the first few times. It doesn't hurt him anymore, he just says it doesn't feel great having cream slathered all over his body. He had clinic on Tuesday and everything went really well. We was actually excited to go. He has learned that not every time he goes to the hospital now someone is going to hurt him. He also loves playing with the child life specialists and he actually talks to both of them. That's huge for him! He now says he wants to be a child life specialist when he grows up. He was also excited to go down to RTU for his back poke because he loves playing with the helicopter they have back there while he gets the sleepy medicine. He also says he likes feeling dizzy before he goes to sleep. Silly kid. They even had his Vincristine ready for him before we went down to RTU, so we didn't have to come back up to clinic when he woke up. I'm so glad this appointment went well. It helps me feel better about things when he has a smile on his face at the hospital instead of a miserable sad look. Here are some pictures of our day.
RTU was running behind so this is what I ended up doing after an hour of waiting.
I finally have the answer to Skyler's mystery rash. Psoriasis.
On Thursday I took Sky up to clinic to have our oncologist look at the rash once more. Something didn't feel right and I felt like this wasn't something that was just going to go away in a week or two. I knew we were missing something. Dr. Lemons took a look at his body and was blown away at how prominent it was and how much of his body it covered. He didn't know what to make of it so he sent us right over to the University of Utah Hospital to have a dermatologist look at it. The doctor only had to look at it for minute to know that it was psoriasis. This was definitely not the answer I was looking for. I actually have psoriasis myself so I know how annoying and awful it is. I would almost it rather be the chicken pox, because if it was that it would go away within a couple weeks with antibiotics. Psoriasis doesn't have a cure. It is a chronic autoimmune disease that causes an overgrowth of skin cells. T cells invade the skin where they prompt your body to grow new skin cells faster than normal. They also rush other cells to the site causing redness and inflammation. The patches often itch or are painful to the touch. I have been dealing with this since Skyler was in the PICU (mine was induced by stress) and it has been annoying, embarrassing, expensive and very depressing to deal with. The days of swim suits, shorts and tank tops are long gone and I also now have psoriatic arthritis because of it. I can barely open Skyler's pill bottles now to give him his daily antibiotics and chemo. Its hard to feel sorry for myself though because what I have to go through is nothing compared to what Skyler has to go through on a daily basis. But now on top of all that Skyler has to deal with having cancer, he also now has to deal with this.
I know I should be feeling grateful that this rash isn't something that is going to put him in the hospital but right now I'm not, I'm mad. I haven't felt anger like this since Skyler was first diagnosed. After the complete shock I felt as my world crumbled around me with the word cancer, I got very angry. I was mad at the world and mad the lord would do this to my baby right after he just took his daddy away from us. After Ben died suddenly from a heart tumor I prayed relentlessly that nothing like that would ever happen to my son. I would pour my heart out every night and pray that he would keep Skyler safe and healthy and not let anything like what happen to Ben happen to him. So you can only imagine the anger that filled my heart when I found out that my sweet little boy has cancer too. Ben's tumor took him immediately, he didn't feel any pain. But Skyler's cancer causes him to suffer everyday. How could a loving father in heaven do this to my son, the one person I asked him to protect? Eventually my heart softened and I'm now grateful for the new outlook I have on life and am grateful for everyday that I have to spend with my son. He could have so easily lost his life a year ago but he didn't. His life was spared and for that I am eternally grateful.
I still am very grateful for all the blessings that we have received throughout this journey, but right now the anger has returned. Why does someone so young have to deal with so much? Why has so much been thrown his way at the tender age of five. I had tears streaming down my face today as I was putting the cream all over his body and he was screaming in pain. When you put the cream on areas that are inflamed it feels like your skin is on fire. It even hurts me and mine isn't all over my body like Skyler's is. We sat on the floor and I held him until he stopped crying. He then looked at me with tear streaked eyes and asked me why he has to hurt all the time. I wish I knew the answer to that. My heart hurts for him tonight.
We are home and it turns out Skyler does not have the chicken pox. They scraped a sample of one of the dots and also looked at his blood work and they both came back negative. That's such a relief, but he is still covered in spots and we don't know what it is. Thankfully his fevers have stopped so that's why he was able to come home and he was able to stop the acyclovir as well. He is doing really well and doesn't act sick so I'm not too concerned. They said there are so many rashes out there that are unexplainable and if he isn't fevering then he should be just fine. The spots don't seem as inflamed today either so that's a good sign too. He was so excited to come home to his new doggie and get out of isolation and back to the real world. His counts are great too so he can play with cousins again. He is a very happy boy right now! Thank you all for your concern and many prayers on Skyler's behalf.
Well we were admitted to ICS last night. Turns out Skyler probably has the chicken pox. His rash is getting worse each day and is covering most of his body now. His temps have also gotten higher, in the 103-104 range. They started him on Acyclovir every eight hours and are keeping him here for at least another couple of days to watch closely for any secondary infections. They said with his past history of infections they are going to be extra cautious. He was put on precautions and is now in isolation. Whenever anybody comes in they have to put on gloves, masks and gown up. We are also in the dreaded room 9, our diagnosis room. This room brings back so many emotions and memories because this is where the nightmare started. This is where our carefree life was turned upside down and was replaced with pain, suffering, long sleepless nights and a world of uncertainty. I'm hoping though to make good memories in room 9 to replace the bad. The day we left this room last time was the day I took my sweet boy down to the PICU, it wasn't to go home. That will change though so we are already headed in the right direction.
Being back here in ICS is bittersweet. I love being able to see our favorite nurses and techs but on the other hand its just another reminder of how much I hate cancer. Sweet Millie is just down the hall. She should still be celebrating being off treatment instead of locked up here with another head full of hair gone. Even though she is GORGEOUS without hair it just isn't fair. There is also another little cancer buddy Connor down the hall and he is having a rough time as well. Every time I pass their rooms it breaks my heart. It reminds me of where we were and where I don't ever want to be again, but unfortunately in the world of cancer I'm not calling the shots. Anything can happen at anytime to anyone. Something I hate being reminded of.
Yesterday was quite an emotional roller coaster for me. First thing in the morning I found out the devastating news that a fellow cancer cutie had earned his angel wings. He was only three years old and he was getting ready for a bone marrow transplant from his little sister. Every time I hear that another little hero has lost their fight, a little piece of my heart goes with them. It is so hard to hear of lives cut short from the same battle my son is fighting. I found this saying on pinterest of all places yesterday and it seemed really fitting. A little boy asks his dad "Dad, why do all the best people die?" Father "My son when you are in a garden which flowers do you pick? The most BEAUTIFUL ones."
After feeling down all morning my day got brighter when we welcomed the newest member of our little family, Jagger. My moms friend offered this adorable little Yorkie to Skyler. At first I was a little hesitant just because of the germ factor and everyone knows how much of a germ a phobe I am, but I knew that this little guy would be such a wonderful little buddy for Skyler. Skyler's stuffed animals have become his best friends and he takes care of them like they are real animals so I knew this dog would be perfect for him. He is two years old and only four pounds. He doesn't shed and is already house and potty trained. The perfect dog. Skyler is already in love with him. I haven't seen him smile and laugh this much in so long. He said to me this morning "I just cant stop loving him." I have already fallen in love with him too. He is just so cute and is such a good dog. He likes to cuddle and follow me around. I am so grateful that this little guy is in our lives.
The only hard part for Skyler is the fact that when Jagger came to live with us he had to be separated from his dad. Skyler still cries alot because he misses his own daddy so much, so he felt really bad that we took him away from his daddy. He just kept saying "I love him so much but I'm so sad he cant be with his daddy anymore." Skyler isn't as sad about it today as he was yesterday because he says they are going to be best buddies.
Things were going great yesterday until I looked at Skyler and knew he didn't look right. I took his temp and sure enough he had spiked a fever. Just hours after getting Jagger I had to take Skyler up to the ER and was pretty sure we were going to have to be admitted because of low counts. We were both so sad to leave this little guy, but uncle Ty came to the rescue and brought his stuff to spend the night at our house so Jagger wouldn't be alone. Thank you Ty! The ER was super busy last night that it took forever just to get us into a room and get cultures done. They started the usual routine of rocephin while we waited for his counts to come back. This morning I also noticed that he had developed these little pinpoint red dots all over him. They said it was probably some sort of viral rash which was probably causing his fevers. Nothing too concerning thank goodness. After hours of waiting we were both so tired and I was not looking forward to an admission to ICS. Fortunately he counts came back looking great. His ANC went from .1 to 2.2! Also his hematocrit went up just a little and his platelets jumped up to a whopping 240. It was a miracle and we were both so happy to be able to go home with our little doggy. He was so excited to see us. Even though it was close to two in the morning we sat and played and cuddled with him before we went to bed.
Although it was an emotional day we are so blessed. I held Skyler a little tighter yesterday with the reminder that life is too short. We got a cute little addition to our family and Skyler's counts have finally made their way up. We can start living again!
On Monday we had our home health nurse come draw labs to see if Skyler's counts had come up enough to restart his oral chemo. To our surprise his ANC (which was in the perfect range days ago) tanked and he is very neutropenic. Basically he has no immune system right now which explains the fevers. It doesn't really explain his leg and knee pain though so if it continues the doctor wants to do a bone marrow aspirate to make sure it isn't leukemic cells causing the pain. So fingers crossed that the pain will stop and his ANC will come up so we dont have to do the aspirate.
I bought tickets to Disney on Ice awhile ago for this Saturday and Skyler has been looking forward to this for months, but now being neutropenic he cant go. I just don't have the heart to tell him yet. This has given him something to look forward to for so long and it would have been the first big thing I have taken him to. I'm super bummed and praying that his ANC will magically jump up today. It probably wont happen, but here's to wishing I don't have to break his heart tomorrow. I have been getting used to starting to live our lives again, but at times like this cancer rears its ugly head and reminds me that it still has control over our lives.
On Tuesday Skyler had another clinic appointment for Vinc and an LP. Everything went really well. His ANC has come down and is finally in the range it is supposed to be but his blood and platelets counts dropped down too low, just as I had suspected. He has been really pale and bruising alot lately so I wouldn't have been surprised if he needed a transfusion, but luckily both levels were barely above transfusion levels so we were able to make it home without any. We had to stop all oral chemo the rest of this week though because of the low counts to let his body recover. I hate having to stop his oral chemo because he needs it to keep the cancer away, but a little part of me was happy because I thought it would give him a week of feeling great. I was so wrong. Last night he spiked a fever and he has been having really bad body aches. His head is really hurting as well as his knees and back. He could hardly walk last night and this morning because he had so much pain in his knees. Even when he is just sitting down his knees are hurting, its so weird. Because of the fevers we went back in to clinic for IV antibiotics and cultures. His ANC was still ok, so thankfully we were able to come home afterward instead of being admitted.
Skyler is still feeling really crummy tonight and keeps saying that he is just so sick. He is now saying his throat hurts and feels nauseous as well. I haven't seen him feel this miserable for awhile and it breaks my heart. It brings back a flood of emotions I was starting to get used to not having. He has been doing so extremely well lately so I have been able to relax and feel really good about things, but seeing him like this again just brings back all those awful panicky feelings. Hopefully he can get the rest his body needs tonight so he can start feeling better soon.