I think I jinxed us when I said this was the easiest phase because this stay has been so different.  Each day I continue to get more worried about Sky.  His fevers have been getting up to 104 and are becoming more frequent.  One time the Tylenol didnt even bring it down and he is also getting really bad chills with them and he is starting to look "sick" when he is spiking.  His blood cultures continue to come back negative which is good but frustrating because that means still no answer.  Yesterday he went down to RTU for his LP and ABR.  This was scheduled to take an hour but he ended up being under for almost two hours.  Because he was under anesthesia for so long, they had to intubate him and they also gave him a large dose of pain meds and some zofran.  Usually when he goes down for his LPs he wakes up so fast because he isnt out for so long but this time the recovery room was different.  When they let me come back there he still wasnt really awake and wouldnt open his eyes.  He was just moaning and whimpering for mommy.  He was also very croupy sounding because of the breathing tube.  It was much like waking up from one of his big surgeries in the OR.  He didnt do well the rest of the night due to high fevers, chills, and a croupy cough and sore throat.  He slept most of the evening and most of the day today.  Dr.  Lemons decided to put him back on his IV antifungal and back on one of his IV antibiotics that will be given every 8 hours that we will continue at home.  I have been stressing my concern that something is just not right and they are actually listening this time.  He is scheduled for a PET scan on the 24th which will hopefully give us some more insight.  They have been putting this off because he has been irradiated so many times from all of his scans that he has had in the last year that from now on they dont want to scan him unless absolutely necessary (which I think this is at this point)

As far as the hearing test result goes we got some good news.  His hearing loss isnt as significant as they thought it was.  He still has loss in both ears requiring hearing aids but it isnt as severe.  He was fitted for them while he was down in RTU and was able to pick out the color he wants for his molds, he chose blue.  He says its his new favorite color now (its uncle Ty's favorite color so I think that thats why its his now too)  I cant wait until we can get these for him.  It will be nice for him not to have to work to be able to hear things.

This was when the anesthesiologist was about to push in the "sleepy medicine"  Skyler was so scared this time because he told me he had to put the breathing tube in right in front of Skyler.  Skyler knows all about breathing tubes and is scared to death of them because he remembers being intubated in the PICU.

I like the RTU because I am able to hold him while he falls asleep, but I hate the feeling of feeling my son all of a sudden go limp in my arms.

I also dont like the fact that I have to leave him looking like this...

Yesterday was a much better day.  Skyler slept in until 3:30 in the afternoon, I still had to get him up every two hours to pee but he zonked right out again when I layed him down.  He didnt even flinch when all the doctors and nurses came in to check on him and to talk to me.  I admit, it did worry me but when he woke up he was as happy as ever.  Right after he woke up he said "Man I was tired, I guess I need some blood!"  It was so funny.  Its amazing how much medical knowledge he has now, whenever he is extra tired he always knows he will end up getting a blood transfusion....smart little guy.  I guess since he had such a rough night before, and since he was receiving alot of chemo that his body was just worn out and needed all that sleep.  He hasnt had any bad headaches today which is nice and hasnt had to have any pain again.  When he does get morphine or oxycodone though he is the funniest, happiest kid and always comes up with a new reason why he got cancer and how they can get rid of it.  Monday he told me he knew the reason why some of his friends have cancer in their brain.  He said there is a little opening in your forehead that the cancer goes in and to get it out they have to give them the sleepy medicine, put a syringe into their head a suck it out.  Then they can get all better and be happy again.  Man, I wish it was that simple.

Through the night last night he started having really irregular heart rates.  It would drop low into the 40's but then jump up into the really high 100's.  Today they have him hooked up to the EKG monitor so they can monitor his wave forms for 24 hours before they consult cardiology about it.  I hope its nothing serious, but some of these drugs can cause heart problems.

Also, I havent mentioned this before but during our last admit Skyler broke out in a rash all over his body.  They are just little bumps all over his body and they havent gone away.  They had the dermatologist come look at it today and she thinks it looks like Scurvy.  Yes, I said Scurvy....weird huh?  It sounds like a pirate disease.  Its cause by low vitamin C so they are going to test him for that this afternoon.  I highly doubt that its that but Im not the expert so we will see.

Today we went up to clinic to see if Skyler made counts to start a new round of HD MTX tomorrow.  He barely made it so they decided to just admit him tonight instead of just having to come back in the morning.  Since we have been here he hasnt been feeling well at all.  He is having really bad headaches and earaches, he has also been throwing up alot and is still having fevers.   Right now he is on morphine for his head, zofran for being so nauseous, rocephin for fevers, fluids, feeds, and a 23 hour chemo drip.  His IV pole hasnt been this full for awhile and we have been keeping his nurse really busy tonight.  So far tonight has been more eventful than our last two stays combined.  Hopefully after getting some rest tonight he will feel better in the morning.  We have his LP and ABR scheduled for Thursday so Im anxious to hear what the audiologist has to say about his hearing.  Lately he has been telling me that his voice sounds different to him, alot softer than it normally does so hopefully we can get this figured out soon.


                                          This look says it all....
  He is not a fan of people poking and prodding him tonight while he doesnt feel good.

Before starting the chemo bolus and drip of methotrexate they give him another chemo called vincristine

When he spikes a fever they have to draw cultures to see if anything is growing in his line.  He hates this part because it is done sterile so it takes longer.

Here is a pic of his IV pole.  Too many pumps tonight.

This is Tawni, Skylers preschool teacher.

The year before Skyler was diagnosed he was able to go to preschool.  Putting him in Tawni's preschool class was probably one of the best decisions I have made as a parent.  Skyler did so well and LOVED it!  He learned so much and most of all he learned how to get along well with others, share, and how to behave in a classroom setting.  I was so sad when we wasnt able to return the next year because of his diagnosis because he was really looking forward to it and looking forward to seeing Tawni and his friends again.

This year Tawni contacted me and said she wanted Skyler to be the beneficiary of the Bountiful Triathlon that her and her husband were putting together.  This really touched me that she would do this for us.  With help from some amazing family and friends we were able to get volunteers to help out with the race today.  I have been looking forward to this race for months, but unfortunately wasnt able to make it today because Skyler wasnt doing well this morning (those dreaded fevers again)  My mom and dad were able to go and help out though and said it was incredible.  I am so grateful for Tawni and her husband and for everyone who came and helped out to make this possible.  On the back of the shirts that the athletes wore it said I tri for Sky.  Everytime I think about that it brings tears to my eyes.  This year has been awful to say the least, but this year has brought so much good to our lives as well.  Today was one of those good days where I thought to myself just how truly blessed me and Skyler are.  I want to thank Tawni from the bottom of my heart for doing this for us and for being such a wonderful blessing in our lives.  She has had such a positive impact on me and Skyler.   I also want to say a BIG thank you to the wonderful volunteers who took the time to come and help out today.  You are all amazing and I am so grateful for your willingness to help!!

Look what Skyler got today.....

......a new feeding tube!  I honestly never thought I would be so happy for Sky to get one.  Its actually more of a feeling of relief instead of a happy feeling.  It has been so hard lately to get him to eat anything because everything tastes so yucky to him from the chemo and he is losing too much weight.  Everytime I see him without his clothes on its like a slap in the face, he is just stick and bones and I just couldnt wait until next week for his other procedures to get one placed.  Instead of having them place a NG I took him to radiology to place a NJ which goes into his intestines instead of his stomach.  He usually throws the NG up within a couple of days and I want this one to stay in for awhile.  He was so scared but did great considering that it took them forever to get it into the right spot.  His dudeum (dont know if I spelled that right) is shaped like a cork screw so the doc had to keep pulling it back in and out of his nose several times before he got it in.  Skyler kept screaming "why in the world do you keep pulling it out?!"  He was convinced he was doing it wrong because it normally doesnt take that long so he kept telling (well yelling) at the guy to do it right.  I have to admit it was a little funny.  He has done this so long that he knows when things arent right.  Once we left the hospital he perked right back up and even said he was glad it was in.  I think I will sleep alittle easier tonight knowing he is getting the nutrition he needs.

Well Sky didnt make counts today so they are giving him another week at home for his bone marrow to recover.  Even though its kind of a bummer to get delayed, I have one HAPPY boy on my hands today.  He is beyond excited that he gets to stay home another week instead of being admitted and getting his back poke, so for that I am really happy too!!

Everyday since Skylers fevers have returned they have been getting higher and higher.  I have called the on call oncologist everynight about them and they told me that if he started acting sick or looking different then bring him to the ER.  Usually if a cancer child has a fever above 38.3 then they know to automatically bring them to the ER.  In Skylers case since he is so different than an average child of his diagnosis and since these fevers have been going on for so long they basically let my use my own judgement on when to take him in or not or to just to dose him with Tylenol at home.  To me he hasnt looked "sick" but the past couple of days he has been throwing up constantly and his fever got high last night so I gave him Tylenol to help him through the night and then took him into clinic today.  The doc just flat out told me that Skyler has every single one of the doctors there baffled.  They just dont know whats going on with him.  They have tested him for everything imaginable and everything keeps coming back negative.  Today they drew some cultures again to see if anything is growing in his line and gave him a dose of Rocephin, which is a broad spectrum antibiotic just to cover him incase anything is growing.  They also drew some labs checking for any kind of fungus that could be active again.   His ANC and white count have come up so they didnt admit him, but tomorrow we are scheduled to be admitted to start another round of HD MTX.  He is also scheduled to be sedated for a lumbar puncture as well as the ABR test (the hearing test and to be fitted for his hearing aids)  However, his platelets were still low today, so if they drop anymore by tomorrow then they will cancel everything and give him another week for his bone marrow to recover.  At this point Im feeling overwhelmed and confused.  I have this uneasy feeling that something is just not right.  I really hope Im wrong about this.  I just wish I could get a clear cut answer and then a plan to make it better.