A Downslide...

of emotions, energy and good times. Our first (always unexpected and never planned) hospitalization since diagnosis is now in effect. Just when Charito and I were finally feeling better. Just when I had my energy back. Just when I was rid of my pneumonia induced blahs. Just when the depressive state October grasped around me was starting to disappear. Just when I had a couple of great times to brag about that made me feel awake again. Like these:

Over a week ago-Triston's first classmate bday party-Halloween theme. He was sooooo excited!It was my first time out in weeks other than Target or Jewel. The whole time T kept telling me "Thanks for skating with me, Mom. This is fantastic!" He knew this was something we always wanted to do and each winter we remembered to I was prego. It was soooo much fun. It was hard on my breathing and I used my inhaler often but so worth it! And I might add-T is a really good skater, the grammar school and high school figure skater mama in me was so proud! Dare I consider hockey for him?!

10/29-Triston's Halloween parade and party at school. Grayson was invited and he was feeling great and numbers were awesome that week so I took him along. G was so excited and T thrilled to have us there. He just shined when he saw us. My two lil pirates!

10/30-I finally got out for some mommy time. I have not had my haircut or colored since before diagnosis (end of June!). My bday present from my parents was a do and pedicure but all I had time for was a do. I told my Aunt (AC) to chop it. I do this all the time. I grow it out to below my ears saying Im going long and then I go drastic and frustrated and chop it all over again. This time we went a bit shorter. I needed it. I told her I was feeling so heavy (I know that had more to do with my stress and emotions and such but anything to make me feel lighter after such a "heavy" month of October I was all for it!). So wallah. This pic was taken by myself in the hospital. I have not washed my hair or done it 3 days and had no sleep the night before so bear with me.

Unfortunately that new "high" did not last. The morning I had my hair done(Saturday) and breathed some fresh air we also went shopping w Mamac for some new season clothes for T and then since the kids held out we went to dinner, just us 5. It was so nice. G fell asleep for most of dinner and I figured it was bc he did not nap. As soon as we got home he slept some more. All kiddos down by 7 pm. By 10:30 g woke asking to cuddle and as soon as I grabbed him to nuzzle he was warm. I took his temp and it was 102 (dangerously high for G). I called the drs and Goodell said to give him Tylenol but if it didnt go down or return we needed to head to the ER. We gave him the dose at 11pm, at 5 am (Sunday morning) he was clear and by 9 am it was back. 102. By 1pm we were at the ER.

I cannot begin to express or describe the look on Triston's face when I told we had to take G to the hospital (we are clear about using the terms hospital and doctor. We had to establish the difference to him early on. To ease all of this). He truly fought back the tears. My heart sank. Even tho he is so independent and mature, those specks of him I assured him that he would still have his day as planned. Uncle Neal, Auntie Amy, Ayden and Uncle Mike were coming over for pizza and treating. That helped but I knew what he ws thinking. He was fearful I would be gone a long time like last time. That has without a doubt left a scar on him.

Mamac sat with the kids until the Harper clan arrived around 1. When I told T they were bringing a pumpkin to carve he said, "I think it should have a sad face for Grayson". I told him it was very sweet of him to remember his brother and that he is an amazing big brother, the best in the whole world.

It was hard for me know I was going to miss Caden's first Halloween. Hard to know that I wouldnt see Triston's face light up with each trot up a stranger's front steps. But I knew he would have a blast either way and his cousin Ayden is such a great distraction. And as a friend reminded me 'He was with people who love him' (thx Becky!). I called him later that night and he said he had so much fun. I was so glad.

Later in the evening around 10 pm I called to talk to my sweetie. He left the hospital round 8pm. Mamac was staying the night and both boys were in bed. But as we were talking T was waking from a dream and Charito went to check on him. I could hear him wake and crying for me. It was so hard to hear. I wanted to hang up to no longer hear it but wanted to know he was ok. He climbed into bed with daddy and fell asleep again. You can imagine what kind of tears I had as I put myself to bed that night.

Before we rushed out of the house Sunday I had everything ready for T for school the next morning. Charito had to go to work and luckily so far each nite Mamac and Titamel are staying overnite to help out. G ran a fever of 102 all of Sunday. In fact the Tylenol wouldnt bring it down and they had to give him Motrin which they dont like to do w children receiving chemo bc it brings down their platelets. The fever remained until Monday afternoon (so far). The chest xray was clear. No pneumonia, no fluids in lungs, no inflammation (good news-meaning the respiratory infection we dealt w weeks ago was all cleared up thanks to a few days of steroids n his asthma meds). Goodell visited us Sunday nite and said we were looking at a possibility of a few things. A viral infection. A bacteria in his blood. A bacteria in his bone marrow. Or a false alarm fever caused by the chemo. He noted he was not surprised we were here and surprised we werent here earlier during our stages of chemo. We were due for one of these at some point. So we just had to tame the fever, run blood labs (CBCs), blood cultures and monitor anything and everything else.

The easy way to explain to everyone out there is that even if this is a simple virus in which any of us would give our kids Tylenol or Motrin at home and push the fluids and wait out, we cant with G. Things could go wrong very quickly for him. Remember -his blood and immunity fighting characteristics of his blood dont do their job when need be. For example, the reason we were out and about Friday and Saturday previous to this hospital stay was bc his numbers were great. Neutrophils and White blood cells in 2 thousands. He was not AS vulnerable as usual to airborne and surface germs of this and that. He was not neutropenic. Well as of Sunday with our first CBC during ER time his white blood cells dropped to 1,200 and his neutrophils to 100! That means that only 100 of the 1,200 cells were actually trying to fight this what we were so far calling an infection. Crazy! Neutrophils of that nature are automatic hospitalization. A fever is, too.

On Monday his numbers didnt change much at all. Not good. Fever til 1:30pm. But later Monday he was eating and drinking more and so playful. By night time he was his silly self and wanted to play on the floor. He was ol chatty Grayson. Goodell was pleased to hang out with him and see all that happy stuff. Happy to watch Lady and the Tramp with him. Happy to give me some perspective and hope-he jumped online and showed me a wedding pic of a handsome man and beautiful bride. As they were heading down the aisle there was Goodell giving the groom a hi-five. I said aww and he filled that aww with the news that he treated that handsome groom for ALL at the age of 3. He then showed me a pic of himself in the middle of the crowded pews with his back turned to the photographer. He admitted he was crying and blowing his nose at that moment. It got me. It was what I needed. Not that I was beside myself w this hospital stay we are going thru right now (I have accepted that it is a bump in the road and EXTREMELY grateful this is our first stay since diagnosis week that first week in Aug. In the big pic the past few months have been smooth. On edge but ended up smooth considering we dont know what to expect each and every mornind we wake), but it is a wonderful and personal thing for him to share w me. I mentioned how ironic it was we were glancing wedding pics and imagining stories bec I had jsut recently posted a blog about G finding the one true love who will accept him for who he is, ALL and all. He then told me, and I'll never forget it-"You will get there. You will have this day" , as he pointed to the computer screen. I thanked him for the chin up conversation and off he went.

He remains fever free up until now 1:45pm on Tuesday. We slept horribly last nite. Frustrating seeing as it was the perfect nite for him to rest up and kick this thing. We are still awaiting test results which is why we are still here. Still waiting for the blood culture that was taken at 2 pm yesterday. The first one from Sunday was negative but when his fever returned yesterday they had to take another one along w blood draw for liver function. Still waiting for the CBC results which were taken at 5 am this morning. We were interrupted at 12 am for a breathing treatment. 1 am for vitals. 4 am for vitals. 5 am for CBC . 7 am from a resident dr who cared less I was sleeping and then woke G to listen to his chest. G finally fell asleep for a nap at 1 pm. He would not give in. Too happy to play and eat his ketchup dipped anything, mayo slathered sandwich and read his books that were generously given to him by a Reading Nook fund.

So I sit here and blog and vent. My guess is even tho I just requested a check on lab results minutes ago they will say we are here til tomorrow. I cant imagine his neutrophils going up that much. This is all taking into account that we had no chemo yesterday to help balance the "weak parts" of his blood. He has just been pumped with antibiotics since we arrived and keeping up with his usual oral meds and asthma meds.

I cannot tell you often Charito and I have discussed how different this would all be if we did not have the people we do around us (and also wishing my parents were here to ease it all on my emotional end). How different it would be if Amy never entered our lives and Ayden didn't surprise us all w his arrival. He is the best play buddy and distraction for T during good and bad times. They are like brothers. Having Amy around who even w her own pregnancy and family to care for understands me. Knows how insanely organized I am and happily set up Triston's uniforms, school snacks and school lunches and labeled breakfasts for me through the week just in case. Mamac and her retired teacher lifestyle allowing us to call on her whenever. TitaMel who is always happy to help no matter what. Papac driving here and there or bringing Mcds at a moments notice. My brothers. Neal juggling a new job and family and still coming over to our house to make it a fun Halloween for T and dress up C. Mike for being the silly uncle and visiting when he can. Our friends who have organized Care Calendars for meals. Najette offering to take T to school this week. T's classroom assistant and our friend Ms A offering her assistance for anything. Our fun times during T-ball that led to several of those kids being in Ts current class and allowing for parent relationships for me-one dad even driving T home from school this week and any other time I am stuck at a chemo session. I just text him and he's there. Alysa offering to take pics of my boys bc I struggle to keep up (poor Caden!) My school staff that writes us beautiful messages via snail mail or FB or drop off a meal. Charito's boss being so understanding and allowing C to adjust his schedule. The meaningful phone calls and texts from friends willing to help at anytime-shop for this, pick up and drive Charito here or there, fix this at the house,etc. The clinic and hospital staff-we have not met one person (from dr to housekeeping) that has not been so kind and helpful. The numerous free meal cards for upstairs dining, free parking passes, books and toys and stickers and treats for G. The endless amount of family support the hospital provides. I never doubt that this is the place we should be. Anytime I see our oncologists I am relieved. They are so good to us. And you have heard me mention Jenny-G's number one gal! It is overwhelming and wondrous all at the same time. Thank you everyone. You all make this easier to handle. I truly mean that. I swear when this is all over we are having the biggest blowout party ever! No one will accept any gifts or money or other ways to thank you right now so the least we can do is party it up all together, every person that helped us get thru it!

So enjoy the pics below bc when we was feeling up to par since yesterday he was my funny playful two yr old. We are getting some quality time together. Gotta luv him!

Nebuelizer treatment with a dinosaur mask (how amazing tech gets these days when it comes to pediatrics!). He hates it. We dont administer his albuterol (asthma med) this way at home. He uses an inhaler w a spacer to puff in and out.

Mayonnaise sandwich. This is the only thing he ate all day Monday. Tuesday he moved onto Ketchup w everything. Whatever!

Monday nite dinner. He was finally breaking fever so I didnt care how he was playing with is food. He's two afterall. He did declare his "mess" and offered to "pean up" (clean up) all on his own.

This is the Distraction Center. Since we are in isolation (anyone who enters must don a mask and gown) they wheeled this baby in for us. How cool!

Playing farm

Tuesday morning breakfast. Pancakes, fruit loops and Saltines dipped in ketchup. The dietician stopped by and was fine w what he is consuming so I am not worried. It's a matter of getting anything in him when he's not well and everything in him when he is.

okay update...4 pm

(this is how long its taken me to write this ONE post-all day)

He is still fever free-yay!

Still on antibiotics.

No blood culture results yet or viral indicator confirmation yet. So still dont know what exactly is the prob.

CBC showed low blood numbers (did not change much again, meaning he is still trying to fight something and we dont have chemo to help out this week. We do not deliver chemo when his numbers at are certain levels due to further damage and complications). So other than antibiotics and the hopes that his blood works itself out we wait. No matter when we leave we will go in next Monday to do blood check.

He is truly acting like he is all better. If we were at home without cancer it would have been a virus that was all cleared up and we would be going about our "old" usual. Instead we have a little guy whose blood is all out of whack and needs to remain here to make sure it rides its course the healthy for cancer way.

Nurse Jenny stopped by to see G. So sweet! We chatted for an hour and I felt great afterward. G slept thru it all, unfortunately.

G just had a nice delivery of books, stickers, a cute blanket and handmade pillow cases to take home.

He still wants mayo sandwiches for meals! Drinking plenty of milk. Took a good nap.

We were told by Kwon a bit ago that if no fever there is a good chance we go home tomorrow with antibiotics to be delivered thru his IV port.

And now E from Child Life is here to play w him for a bit. They are playing farm. She is another familiar face from chemo Mondays. He likes her and her hubby happens to be Filipino so we have something in common!

It's been an overall good day. Now to check in on T n C at home. Keep you all posted with any news later. Ill catch up on October at some point and provide you w a glorious gallery of pics of my little grain of rice, Caden, soon!