techdragon

Just got home from the hospital... yep, 5:11am.
Went in at 11:30pm.
Skeeter's fever came back and spiked to 102.5

More antibiotics... and clinic check in Friday AM.
they were almost helpful.
Tired.... fucking tired.

September is Childhood Cancer Awareness ... Though Skeeter's daycare we are raising a donation to the Childhood Leukemia Society and just decided to share the link. Please do not feel obligated to donate but if you can get your hands on a gold ribbon, please wear it and think of us.

Got more information last night. The MRI is today and Skeeter has to be NPO for the next 6 hours (no food or drink) and he last at yesterday at noon. Crabby is not even close to what he is feeling. We have decided to hold his leukemia treatment for a couple of weeks in order for his counts to get higher and some effect to start on the blood clot. The next phase of cancer treatment is pretty rough and lasts three weeks (then we are close to the easy part:) ) and is very rough on his body so since he will be also battling the clot - it is best to have him at his best.

The treatment for the clot is difficult. They do not invade on the brain so we have to only use drugs. They are using a low-count heprin (stuff they give stroke victems) and we will be giving the same stuff at home. It is a subcutanious injection and will happen twice a day .... for THREE MONTHS. (this on top of regular treatment). There will be followup MRI's and MRB's and CatScans till it is gone and then every couple of months to make sure it stays gone.

School starts Thursday and J is FINALLY doing a hospital stay so I can get to the first day of classes. Being here this much is really starting to stress me. Luckily for me, I have the same TA in Botany as I had last semister for Skeeter's leukemia diagoisis... she already contacted me with the syllabus.

( rant )
My god. I am angry and I am tired and I hurt... alot.

On a somewhat brighter note. catnapping and I are going to see "A Home at the End of the World" tonight at 9:30 at Westgate and get dinner before hand (7:30 pm at Applebees). Anyone want to join us?

Not sure when we are going home.

Skeeter is really sick and in so much pain.
Getting full spinal and leg x-rays tonight.
He isn't talking, moving, or eating.


:(

Still in the hospital- Skeeter's count are still dropping (currently down to 156) and he might be home tomorrow with at home IV antibiotics. He has chemo on Tuesday that will probably knock him ANC to 0 - which just means trouble. But they don't stop the process except at time which are 'count dependant' but this is not one of those time. PJ and him are currently giggling up the entire ward :)

Just got news this AM that Tina and Lloyd (my adopted parents that I am much closer to than the parents who raised me) are moving to Alaska. They lived there for a short time in 1998-1990 and both are military. Mom managed to get an awsome raise and promotion by going and now that all of the kids are out of the house - they are going to move in September. I am going to miss them being close by... Alaska is a little out of my reach.

Decided to sign Skeeter up for "Make a Wish" when he gets to maintance... What should we get for him or do? The standard is a trip to Disney but can anyone think of something else either cooler or different for a young boy? Suggestions?

Spend the day at the hospital....
( Here is the rundown )

It is 1 o'clock am and I am crying in the bathroom. How cute.

I just finished giving Skeeter his IV meds. (Sterile technique; Defridge meds 1/2 hour before, Load syringe gun, uncap Skeeter, flush line, uncap gun, start dispense, one hour, end dispense, flush line, heplock line, cap line.) His next dose is at 7:30 am - meaning I will be up at 7 am to prep. The dose after that is at 3:30pm.. meaning I will be home at 3pm to prep. In between I am supposed to work and do things and be places. I am not yet sure how to pull it off. As of right now (finger's crossed) the antibiotic is done as of Monday. Tuesday is sedation and chemo. Wednesday... my life? Maybe? School starts again on Monday the 24th.... gosh.

I wish I was two people.

I took a final exam today that I am not sure I even studied for. A weekend in the hospital tends to warp time and reality and though I think I did okay - I did not do my best. Instead I had to settle for the "best I could at a time like this." I hate settling for that. I know that I am smarter than that - I just ran out of time. Please can I have about 4 more hours a day? Please? I started to cry before I took it (I even had to reschedule my exam around Skeeter's meds and therefore was the only one taking it at the time) and cried afterwards.

I am such a failure.

JL went to Urgent Care tonight - a second reoccurance of a testicle problem. They got a little worried and sent him to the hospital for an ultrasound on it... in search of a possible twisted testicle or a tear in the testicle. Put him on anitbiotics and vicotine. The ultrasound was all clear - just looks like an infection so tomorrow he has to go to the Ureologist. Guess who has to take him? Guess who is sleeping peacefully behind me, spread out over the entire bed? I wish he could give Skeeter's meds but between his work hours, his left hand and lack of training - it is all up to me. Plus now he is "sick" with some sort of problem.

My problems are small and I just work through them.

PJ is feeling neglected... I know it. I can feel it and I can see it in his eyes. I don't know what to do about it. I am so short on patience but I know that I need to be there for him. I just can't seem to manage it. I should let him stay up late. I should let him have private time but once gain, where are my hours? He understand how Skeeter needs me right now. I just wish I could be a better mom with PJ too... right now.

I wish I was a better mom.

I am tried to a point that I am not sure that sleep will even fix and truthfully, "well rested" is a long ways down the road. Yet, as always, I search for some sort of distraction to call my own and to fixate my emotions on. Shopping makes me happy - for a fleeting moment and then the depression comes back. I try not to be depressed and I realize that happiness is supposed to be fleeting and content is the major goal of one's emotions. I would love content right now. I should try harder to be content.

I followed the whirlwind... I just wish I could catch upto it.

I wish I was three steps ahead... the supermom. Able to handle all crisis - and reschedule life's necessities at a moment's notice. But part of me is losing the spark that seem to make me ... well... me. I feel depressed, sad, broken and all in all rundown. It will change. It will get better. I just desperately need to somehow be brought back up.

Any help out there?

I lost my sense of self this weekend... and it was messy.

I was depressed. I was angry and most of all I was just unable to function. I got no work done, no school work and no housework. If was as if I was paralyzed and could only sit and focus on my computer screen. I managed to pull it together for game but even then I was a little too spacey for my own good.

I spent most of Sunday in my own view of "therapy". I made myself look at this list of webpages Stories and Faces. Unlike most places that have links to homepages of patients, this one does not warn you if you are going to hit an active page or a memorial page. I spent about 6 hours crying and it really started to hurt. So far this has actually been the best way for me to cope. I have to remember that he could die from all of this; either the cancer, the harsh treatment or some side effect like seizures or brain bleeding. I have to remember that there is only an 85% chance of survivial - which mean living over 5 years past diagnosis and things do happen.

If it was me and not Skeeter I think that I would feel better. I can convince myself to fight and that all the pain is worth it. It is alot harder to teach that to a two year old whose entire body hurts him. It is hard to explain why we are poking him with needles, sedating him once and week and making him take so many medicines. I hate it all but I am not willing to let my baby slip away from me.

The routine falls into place though... and you just do it. The sleepless nights (up three times to change his sheets and his clothes from the sweat and pee), medicine twice a day, laundry that just seems to circular from washer to dryer to room to washer again, cleaning everything and every hand, wiping down ANYTHING in the bathroom that the chemo diapers could have touched. It just happens and suddenly it is normal.

Here is my rant that only Stryck may understand.

I grew up in a "Hallmark" family. Almost never did a week go buy that I had to buy, fill out, and send a card to someone: birthday, anniversary, thank you, thinking of you, sympathy. I could have funded my entire college education on those cards and stamp. It was expected of me and I did it. When my cousin Joan got sick with breast cancer, I sent the cards; at the beginning, the middle and the end of treatment- an absolute plethora of "thinking of you" crap. Now, the tables turn... it is not a birthday or something so trivial and even though I claim to not really be a card person... the thought counts. I have received cards from Dreamspeaker, kate-kat and one aunt. Where the f**k is the rest of the "family" - the ideal of goodness that I have been trained to raise up to... NO WHERE! A few notes of support from Stryck's sisters and mom are on Skeeter's webpage. But damn it... I want a return on my investment in Hallmark...I want my damn cards.

Also, some friend of my mother's gave her a gift and card to pass on to Skeeter. It was a cute stuffed bear and a nice card but the kicker was my mother. She brought with her an extra thank you card for me to send to this lady and actually told me to do it in a "timely manner." I just started laughing... nothing in my house is done in a timely manner anymore. What a joke!

I think I am a little closer to better... still a little depressed. I know that we can beat this leukemia and I have found alot of support on line from other moms in the same place and I DO have my friends. It is just a reality that there is something to worry about. I hate the hurt that I have to cause Skeeter but I know it is for his own good...and his life.