Brighter ZZZZZs

Grayson and I participated in this activity to get out of the room. A change of pace from the playroom down the hall. I figured why not. But, I had never used a sewing machine before. I remember watching my Great Grandma Adeline sew all time, in amazement. NOW I can say I know how. Grayson helped! And not only picked out a design for himself, but Triston too. Space for T and Santa for G.

I met some amazing women that day. The organization began all because a mom suffered right alongside her son. I know what that is like. The group of women I met were truly inspirational. Visit their website and learn all about it, and how you can help if you choose. I would be happy to deliver any kits at the hospital if you want free delivery ;)

http://www.conkerrcancer.org/

And here is their Holiday newsletter:

http://mim.io/bf528

I had no idea our pics would be posted. I just thought they were taking pics for their own journaling and would send them via email to me. Well, they did that and then some. I am touched. The Chicago chapter correspondent also contacted me to thank me and wish us happy holidays and a happy birthday to the boys. Too sweet. We are so blessed by the amazing people that have entered our lives in what could be such a scary place, and instead we call it our second home. Thank you!

Holding up his pillowcase creation!

Last minute pics of Week 18 hospital stay

Strolling down the hall as he turns to tell J, "C'mon J, your turn!" Wierd to think there we are chasing him down the hall as he is hooked up to IV, a IV string instead of a "leash" to keep him nearby as he gets pumped with chemo and fluids. Still takes some getting used to. But still cute as hell!

Cuddling with his bear he was given from the Humor Cart. Kathy (our fellow newspaper pal) offered him to choose one for Triston (after he asked "Dinosaur for Tis Tis"), how sweet.



Telling me, "Watch mommy! Wooh, wooh wooh" as he would fall backward and plop onto pillows.

We also make tunnels with our pillows for the cars AFTER our car washes (there is a system here, ya know!) Look at those cutey toesies inside the tunnel!

3rd Batch (part 5-finale)

We are home! The week flew but today draaaagggggeeeeeddddd!

Remember how yesterday's 10 am metho number was .18??????
Well, the 3pm draw number was .21 (which we didnt get until 9 pm)

You read that right-it went up!!!!!!!!!!! We wanted answers and it got kinda frustrating. Had it been explained to us that this can happen we probably would not have become as worried as we were. And yet as quick as our nurses were to get answers everyone seemed to think it was a rush factor for us bc we wanted to get home. Everyone but the nurses that is. They understand us bc they deal w us day in and out. But these resident peds kinda drive me nuts sometimes. There are a few I adore and others I would skip out on a lunch date w anytime. I insisted a resident get some answers or at least what Goodells response was when he read that count. No one knew bc he had left for the day and those that did seem to know something said he didnt seem that concerned. Fine, really that is fine w me...as long as Goodell saw it I felt better. I knew that if the count didnt budge this morning after two overnite doses of Leucovorin and Musical IVs he WOULD come to see me.

So I went to bed hoping that things would improve in the morning. He was due for another draw at 6 am which we would have results by noon (but I sure didn't go to bed before also INSISTING his HALS/HELS -electrolytes and kidney/bladder function counts-were double checked as well as that numeral .21 itself. We have been given a count w or w out a zero in there which makes a huge difference. I wanted the lab contacted to be sure.
I really didnt sleep well, to be honest. I was engrossed in Dexter season 4 and freaking about that count. I know it didnt go up much but it still worried me. I was pleased when the nurse came in and agreed to give him Lacix to make sure he pees and we help push that elimination process along (and we knew it would be another night of no pee for my potty boy).

The next morning (7 am today) nurse Michelle (G calls her Shell) was assigned to us again and she assured me that the number was not to be all worked up over. SHE was the one who saw the count for the first time w Goodell over her shoulder and they both were surprised but not concerned. She was hunting it down for me while she was closing up her shift (apparently she checked relentlesslu for an hour straight). He directed her we were to be there another night and to inform him immediately if it contd to climb even the slightest. It is too bad it went up bc before the count popped up on the computer Goodell had even told her that he would let us go home if it was a .1 How nice of him even though usual protocol is below .1 Too bad, huh? It just stunk I couldnt get that message from her directly instead of some resident who really seemed annoyed by me. Can you tell I LIKE who I LIKE and get a bit controlling?! After I spoke to Michelle I was able to drop it and move on. He had two doses of Leucovorin since and lots of pee so I was pretty sure we would be good to go.

By 9 am Michelle and a resident Ped I like came in with the good news. The metho level was .07, finally under 1. We were going home!

At 10 am several coordinators entered our room-Child Life Mangers, Nurse Leadership and Publicity requesting our presence for a videotaping regarding the Humor Cart (again). We chatted and smiled about the Tribune article. It was really nice to discuss how bittersweet that moment was with them. Well, I guess since then many other newspapers and tv channels want a piece of the Humor Cart and we were invited to participate again. This time I would be interviewed longer and G would be filmed playing w today's volunteer of the Humor Cart. We were headed to the play room anyway, so why not?

In usual hospital time-things got delayed and such and we did not get done filming until almost 1pm. But it was so worth it. I enjoyed talking with the team and before I knew it was crying during my interview. Sometimes the simplest questions are the most emotional for me (or is it those from strangers)-'What does Grayson's smile mean to me when he sees that Humor Cart?' I was answering just fine...then a breath...then tears. The truth is-that hospital means more than words can ever express. Every tiny nook touches my soul.

I believe I noticed the camera crew was from WCIU, but I will let you know when I know more. Either way, G enjoyed almost 3 hours of play outside of his room today. He even met a little friend, J. The two of them followed each other up and down the halls w their mini shopping carts and strollers while everyone else ooohed and ahhhhed over them. Imagine two little diaper buddies chasing those halls in a unit that mostly cared for teens this week. They were by far the littlest racers down those hallways. It was a precious photo I wish I could have taken. So many times G yelled to him-"Wait _____, I coming! I go shopping for chicken!"

After our taping and eventful play times G and I headed back to get home. We had to wait a bit for the heparin to arrive in order to de-access him. G fell asleep while we waited.

From the moment G put his coat on he asked for T. He named all the things he wanted to play with together. He mentioned the items he chose for T in the hospital. There was no containing his excitement to get back home to his bro. Melted my heart even when I stepped out into that cold air that I hadnt seen in days.

We have Monday off! Counts good enough to wait til following week but I made a request that squashed "the week off" hurrahs. I asked if we could come in Thursday (since I am already there for Caden's checkup) for a blood count. We really want to know his counts before the boys' bday party next Saturday. It would be a whole new reason for me to cry if G couldnt attend his own bday (even tho it consists of t's friends and classmates some of those kids' siblings are G's friends, too). I am taking every precaution. When I arrived home T had a fever. It is def a virus of some sort. He is now wearing a mask. I am keeping G away from all of T's school activities next week due to the crowds (his in school bday party, holiday concert, and holiday party). This party is THAT important to us.Why---here is a perspective

Dont ask me what I am feeding anyone at the party bc I dont have it figured yet. I have only had the time to purchase favors. I am skipping decorations bc who cares! But food and cake are an issue and I am behind on that. I still have xmas shopping to finish up that needs to get done really soon bc G and I are back in the hospital the Monday before xmas. The list of errands is endless the next week. But for now I am gonna close this post with this thought-
when you think of this this evening know that we are already soaking up the hugs, kisses (behind masks) and laughs. It has pretty much been non stop since G walked in the door. We are ecstatic to be home and pleased to know it was another week of treatment w lil to no bumps in the road. The happy energy in our living room as I write this is enought to make anyone smile on thier worst day. I love it!! I missed it!! I love all 4 of my boys sooo much!

3rd batch (part 4)

Toys from the humor cart and a visit from student volunteers from a nearby therapeutic day school. So sweet.

The two pillow cases we made together. He chose santa for himself and planets for Triston.

Thursday

Grayson's 42 hour methotrexate draw was at 2.02 at 4 pm yesterday.

His 48 hour draw at 10 pm last night was 0.4

He just had another draw at 10 am w a dose of Leucovorin 30 min before to help that number along. Should get those numbers soon.

CBC results as of 4 am :

WBC 2.6

Hgb 10.5

Platelets 303

ANC 1,300

Methotrexate chemo did not slam him TOO much so far. With that Hgb count no need for transfusion. ANC count indicates he is not neutropenic (he is if it goes under 1, 000). Platelets are looking good meaning no concern for new bruises.

He has been sleeping really well this stay. On his first nap of the day right now, 10:30 am. Ate a whole mini box of cheerios for breakfast. His fluids got pushed to a rate of 90 (vs the usual 60) to quicken the elimination process. Between fluids and past transfusions his body has proven to be able to handle that rate of push thru his port so we use it when we can. We are close.

So far Triston has not thrown up since last nite and I hope it stays that way. Cannot wait to get home.

I'm gonna take a Dexter break right now while he is napping!

4pm

So nap did not last long bc we needed to reach urine output parameters so he slept for 20 before we had to wake him and get him walking to pee. He has not been peeing over night or during naps. He has not for weeks. Wouldn't be a prob at home, but here in the hospital when we are constantly monitoring organ functioning it is a prob. We dont care what he drinks as long as it is something atop the IV fluids. Oddly enough he doesn't like the typical 2 yr old drinks. He does not ask for pop often even tho we allow him to drink it in the hospital. He does not like chocolate milk or many juices of any kind. He is all about milk and for some reason he has made the connection that "milk" in the hospital is pediasure and he prefers that, even when I try to sneak whole milk in. If Leukemia wasn't in the picture and he was not already potty trained (T was before his 2 yr bday) this would be the best timing! He has been sitting on the toilet doing the motions since January. Telling us when wet and dirty since March or so. But, alas we will hold off til we know we are not in any stages of treatment that could compromise our success. I don't want him to get frustrated or regress in any way (me either).

While we were up we headed to the play room, visited the therapy dogs, received a visit from the humor cart (the same lady we shared the newspaper with-it was so nice to see her and share our post stories), sewed our own pillowcases and now Aerum is reading to him. It's a precious love/hate relationship I have w this place.

10 am draw was .18. Not quite there yet.

Drs ordered a 3 pm draw of his methotrexate level. Waiting on those results. Maybe go home tonight?

Either way, I hope it is an early bed time for the both of us. I have a pounding headache.

5:30pm

What am I thinking? We live on hospital time here. No way we are going home tonight. We have not received metho count yet.

6pm

He just fell asleep. I'm taking some tylenol and vegging out in front of dexter.

3rd batch (part 3)

We received our metho count for the 42 hour mark-----2.02. We are getting close! So he is due for another draw at 10 pm and his dose of Leucovorin, that vitamin "rescue drug " that facilitates the breakdown and repair of the chemo in his system (in one hour for the 48 hour mark). I also asked for a CBC when they draw again in the morning. I am curious of his platelets and hemoglobin counts. If he is due for a transfusion I would much rather it be taken care of while we sit and wait out the metho level instead of reaching a green light for discharge BUT getting stuck here for the transfusion to take place. There is no need for a CBC to be taken after the metho level is in the safe zone when we could be monitoring it all along.

Okay, NOW I am gonna settle down with G. Btw-T threw up again and Najette reminded me the norovirus is going around school. Let's hope it is not what we have going on. So far no diarrhea or fever. He fell asleep after drinking some gatorage and we are going to keep him home from school tomorrow. Ugh--I just wish I was lying next to him right now. I didn't even get to talk to him afterschool today, he was too busy with vomit and play.

3rd batch (Part 2)

Breakfast time

Play and art

Lounging during quiet movie time

When we arrived at clinic Monday he was prepared for a spinal and CBC. Then if all is good we head to admissions. Obviously, our numbers are good bc here we are!

As of Monday, Dec 6:

Hgb 11.5

WBC 5, 180

platelets 320

ANC 2, 620

REALLY good numbers.

Too bad they were gonna get crushed by a 24 hour chemo treatment.

Our Monday looked like this:

9 am arrived to clinic

CBC report arrived by 9:45

Done with the spinal injection (intrathecal) of methotrexate by 11 am

Headed to the au bon pain bakery for To Go lunch and then to admissions

In our room by noon

Hydration prep of fluids began at 3 pm (lasting 6 hours)

By 9 pm his urinalysis reached the correct parameters to begin the methotrexate

(a record time for G!)

Began methotrexate (the neon green one) by 10 pm along w fluids thru his port (lasting 24 hours

By 10 pm Tuesday night we pulled the methotrexate and drew our first toxicity level (see above for that count). Another record for G-no hangups along that 24 hour route like last time. He also received his dose of Vincristine (push through his port).

He has been on fluids since and we are playing Musical IV fluids bags to keep his urine PH between 7-8. 9 is too high and 6 too low. Thus effecting the kidneys and spleen.

Today is Wednesday and he has not had a CBC since Monday but his first toxicity level draw of the day was 85. Anything under 150 at the first draw (24 hours since methotrexate started) is good. Now we wait for that number to fall below 1.

He is in a good mood with a few tantrum bouts today. It seems today he has been hitting a tired wall every 4-5 hours and takes a catnap. But today we went on a few walks, hit up the playroom and had a visit from the humor cart.

It actually has been a pleasant week so far. We just keep waiting on those numbers!

We have had one of our fav nurses Jenn and a new one, Jessica. We really like her! Someone I can talk Dexter talk with! I am catching up and finally reached season 3 last night. I am getting there. It is rather addcitive.

Mamac has been taking day duty with Triston and Caden before she heads to work.

Night duty-My Aunt Candy (AC) and Uncle Tim watched T and Caden Monday and Tuesday and T told me he had lots of fun. I am surprised she didn't kidnap Caden each night and take him home with her!

Today and tomorrow Lula Mel is on night duty, thanks to Papac being able to drop her at our place. I am worried about T. I just spoke to Tita Mel and he threw up afterschool, so instead of Charito visiting us tonight I told him to go home and monitor Triston. I hope he is ok. It is so hard when I am not there.

G had a decent appetite today-oranges, pears, strawberries and spaghetti. We are pushing the pediasure bc that seems to be helping with that ph balance, especially in the last few hours. It is now 8 pm and I am ready for bed. He is already in the zone, with a bit of sillies here and there.

Like this one....

Remember how we place cotton balls in his diaper to measure his urine output? Well, he found one under the blankets today and I heard, "OH MAN! Bryley make mess! Bryley! You fix it!" , in his typical dicator-like voice. I bust out laughing! I recall him at the age of one as we setup the Christmas tree. White cotton fluff fell out of one of the boxes and he insisted it was from Bryley's body! He really was concerned. I remember him repeating oh no and calling out to her. He followed her around trying to place it on her tail or anywhere she had white fur. It became a hopeless feat but hilarious nonetheless. Or was that Triston-again, brain mush but was def one of my guys. At least I can say I KNOW it wasn't Caden!

3 rd Batch

Today marks our 18th week of chemo. 18th week of Leukemia. 18th week of all this. We are nearing that 6 mos mark and that moment will be nothing more or less than bittersweet. We are progressing along our journey, yet still wishing to hit the delete button.



I despised some of the thoughts I had on our ride to clinic this morning. There I was, hoping for good counts, goood enough for us to get admitted. Odd, huh? Wishing to be in the hospital for a week? But, if his bone marrow is cooperating even when dumping all this poison into his pipes we hope to stay on track. Meet our finish line someday. I hoped for us to take care of this batch this week not next-too much to miss out on next week. Triston's bday. Christmas concert and holiday party. Events I want to be there for. I cannot disappoint him.

It urked me to put the finishing touches and final words to the little things I prepared for Triston in my absence this week. This weekend I made him a paper train and wrote "___(last name here)_____ Cargo Line" on the freight cars. I told him whenever he is thinking of me or missing me he can look at his train and I am thinking of him. We will remember each other and how much we love each other. I laid out some afterschool activities for him as well.

I ran across this article on facebook: http://www.hybridmom.com/node/1979
It reminds of what us moms do on a daily basis. And MOST days, we are happy to, bc we could not imagine a life without our children. I KNOW now more than ever the truth behind that statement. But I lead the life in that article and then some. My MOST days become MANY days. Days that I hold so many different roles, and at times I can't even keep track of myself along the way. I have noticed that more so the past few weeks. I am emotionally or worriesome -like tired. I am so forgetful lately. That organized being has been lost along the way. It took us forever to get out of the house as a family of 5 on Sunday for my family's Thanksgiving in Roselle. I am out of practice when it comes to adventuring. I ran around like a chicken w my head cut off trying to gather the usual diaper bag stuff plus the Grayson medical stuff. I remember feeling disappointed in myself for the lack of "mommy in me". Will I get over that?

My roles as mommy, cleaner, chef (not so much thanks to friends and frozen Costco dinners), shopper, interpreter, mediator, nurse but without the license, protector, hugger, kisser, clown, fixer, wifey, secretary, doctor-clinic-hospital advocate and personal manager to G, researcher, and doer of special touches to keep my kids sane, loved and safe during this time overlap constantly. And unfortunately, in January, I need to add working mom and spec ed teacher once again to that list.

There is no word big enough to express my fear for that month. I seriously question myself and how I am going to juggle it all. I know I will eventually reach the morning of and get thru it somehow bc we all do what we have to do. But knowing that the day will pass and before I know it I will be home at the dinner table w the day behind me doesnt make it any easier. The flood of anxiety that consumes me just with the simple thought of walking through those doors is overwhelming. The tears want to overflow right along with the thought itself. Facing people, questions, reliving that moment of diagnosis. Real friends there won't ask or confront. I know that. But it's the uncertainty. Not to mention re-entering a world I haven't even thought of, literally, in months. Any other maternity leave I have touched base for info on my students (even completed the report cards from my home) but this time it is more than different. It is another world I feel so unfamiliar with. A life I used to know and am forced to return to. Insurance just isnt fair when it comes to cancer that is for sure. How am I going to even be half as good as I was? How? I have been proud of myself as a teacher (in the past few yrs), confident in my strategies and implementation. And even more so because of the amazing staff I get to work with. I will need them now more than ever. How to teach? Those are files I haven't opened in my head in so long and I will need someone to push me along the way. I know most would say it is like riding a bike, which I am sure it will be. But I can't help but feel like I will need my training wheels on for awhile. I know it is just another chapter to this journey, but boy does it feel like a heavy one. A heavy chapter to add to our "new normal" life book.