Just a quick update

I apologize to those of you checking the blog on a regular basis for the absences of posts these past few days. As some of you can probably guess, I'm emotionally and physically drained and sometimes the thoughts in my head are not appropriate for a blog.

Lisa finished her first round of outpatient chemo last Friday. I was pretty grumpy by the end of it, but she was doing pretty well. She basically spends the day hooked up to different drugs and has the option to watch any movie she wants from her "princess" chair, do a craft, play a game or drag her pole and parent all over the place.

While for the most part she is in a good mood, I find I am not. I think part of it is psychological as I realize the gravity of the situation and I sit and wait for side effects and what's next. I'm also thrown by the realization that we are just beginning this long journey, yet I am already exhausted. I fear that I might not be able to pull myself up by the bootstraps, suck it up, and keep staying in the moment. I fear what might or might not happen at the end of this journey. I am stuck and feeling helpless...it is out of my hands to make this go away. Each day I wake and hope it has just been one very bad dream. I'm tired.

I seek clarity each day as I realize this is truly an area I've always struggled in....living for today. While I say the words often, sometimes I don't grasp them. I find that I tend to live in the "when I get through this" mode. When I get through this semester, when I get through this project, when I get through this adoption, when I get through this winter, when I get through this cancer. The truth is by waiting to "get through" I'm missing out every day on life. I have 4 wonderful children and a great husband and while I try and get through, I missing out on a lot of opportunities....as I've said before, we never know when God will call any of us back so we should live each day as it is our last. I know this, I believe this, I just seem to be too tired to remember it. Okay...enough blathering...now you see why I haven't posted all weekend!

So....Lisa had an okay weekend. Friday, she was full of energy. Saturday and Sunday she wasn't as peppy. She is still getting about pretty well and we've brought out the training potty again so she can maintain some of her independence. Unfortunately, she is still fighting some kind of urinary tract infection which causes her to have a lot of accidents and pain. Pain that makes makes her uncomfortable and crabby all day and wakes her at night.

She gets daily meds for pain, nausea and infection as well as a shot to boost her white blood count (Mike gets the honors of doing this). We also need to flush her lines every day and change her bandage every 3 days...which she hates because...well...you know what it's like to have a bandage ripped off your body! Lucky her gets a new one put right back on after the area is cleansed, just to be ripped off again 3 days later. We also have to take her every 2 days to get her blood tested to see where her counts are.

Today was the first day she threw up....not even sure why. She said her stomach hurt when she woke up, I gave her the anti-nausea med and shortly after she gave it back. Right after that she ate 2 bowls of cereal...you go girl. The rest of the day we spent running all over town for appts and doing a little shopping. The big moment of the day was hair cuts. Everyone got one and while Lisa initially pitched a fit (I think she's just tired of people touching her) once her siblings were done with their cuts and came over to talk with her, she cheered right up. I'm sure she thought we were crazy as we kept swooping up her curls that were dropping so we could save them! Whatever for, I'm not sure, but we have a handful of them!

So...her she is with her new hairdo and and looking like she is 2 again...move over Shirley Temple!

Cancer Stinks

Couldn't resist adding this photo. She's 3, she doesn't care now....however, in about 10 years, I'm sure it will get Ma and Pa in trouble!

Thursday 6/24

Thursday was another good day for Lisa. All in all this week has been surprisingly “good”. Good being the relative word of course. As you’ve read earlier in the blog, Lisa wasn’t even able to sit up on her own last week due to the pain. This week however she’s been getting up and down just fine and even managed a hop or two. (That would have been a feat 6 months ago) I suspect that her increased ability this week is in large part due to the cycle that began months ago where her difficulties would come and go every 3 or 4 weeks. The pain medication she’s on now is prescribed for every 4 – 6 hours but she seems to be comfortable with only 2 doses per day. Her biggest discomfort at the moment is the urinary tract infection (UTI) which was most likely introduced when, or after, the stint placed in the tube that connects her kidney to her bladder.

For those of you unfamiliar with Lisa’s chemotherapy treatments, they begin with hydration (saline solution) via IV for up to two hours, followed by meds to ward off nausea, followed by the chemo drugs, antibiotics for her UTI, followed by more hydration. In total the treatments are about 6-8 hours long. Then we hook her up to her portable IV pump and take a bag of saline solution, four hours worth, to go. Add all that fluid up and you’ve got a 3.5 year old having to pee an awful lot.

The staff at UofM Motts and the Pediatric Cancer Center is first class. They really cater to the kids and try to make the best of a bad situation as Linda pointed out so thank you UofM. Lisa does appear to be charming them her crazy curls and silly antics that only 3-4 year olds can do. Other people that I’d like to thank are my uncle Tony Fiorello, My cousin Dr. Larry McMaster, and good friend and godfather to Lisa - Matt Holowicki, RN for attending the meeting on 6/18 to help determine the best possible treatment for Lisa. At the request and advisement of Uncle Tony, second opinions have been received (thanks Larry) and the consensus has been unanimous that the treatment path we’ve taken is the best choice available to us and furthermore we are in one of the best facilities with some of the most capable doctors for this type of cancer. So we have that going for us as well as all of you praying for her. Please keep it up.

So Far So Good

Well today was my day to take Lisa for Chemo. She had a really good day and chemo wasn't all that bad. We started with check in at 9:30 and then hydration. Once she was hydrated they just kept switching bags of drugs and hydration and after about 8 hours it was time to go home.

In those 8 hours, we spent time painting, doing puzzles, celebrating another patient's birthday, reading books, playing games, taking a nap (Lisa, not me) getting a 10 min massage (me, not Lisa) and numerous trips to the bathroom (all that hydration makes a little girl gotta go).

We're very pleased with U of M/Motts. All the staff are helpful. The areas are very accommodating from Popsicles, to activities, to massages. They really are trying to help make the best of a bad situation.

Lisa was in a great mood and feeling pretty good today. She was up and about and playing. She actually ate both lunch and dinner today!! Yahoo.

Once we got home, we enjoyed a boat ride on the lake. She wanted faster and more bumps. It was definitely a good day.

Chemo Day 2

11:00 a.m. Day 2...just an add-on to the update below....talked to Lisa and Mike on the phone. They are at the hospital and Lisa sounds very happy and she even hopped this morning. Sounds like a small accomplishment, but given the pain she was in on Sat, hopping is good!!! Gotta like those painkillers!

Just a quick update. I can't give a lot of details as to the chemo treatment yesterday because Mike handled that and when he started to fill me in via phone, I got a little queasy. Let's just say the conversation started with "Lisa threw up before we even left the house". (Those of you that know me know that I'm not the person to have around when there is puking going on. Just typing the words is making me uneasy...and even though I'm a Mom it is still something I can't and don't plan to get used to!) The conversation then went something like this...had a temperature.... urinary tract infection (probably from stint), antibiotics,...she was pretty out of it... ....sent home IV bags.... we give shots....blood taken every week.......

OK, so I went into avoidance, info overload, shutdown, not listening, stop talking, arghhhh...thank God it was Mike and not me with her mode.

So....if we want more specifics, we'll have to get Mike to blog it. I spent my day carting the other kids around to appointments and pretending none of the Lisa stuff was happening. However, that fantasy will be short-lived because tonight I go on duty and stay with Lisa at the Lake House and do chemo treatment number 3 tomorrow.

I can say that by the time Mike and Lisa returned from the hospital after 8 hours at Motts yesterday, Lisa was very well hydrated, her temperature had broken and she was sounding much perkier on the phone.

So more to come...keep praying.

And a big thanks to Laura for coordinating the meal drop offs and to all of you doing the cooking. Also thanks to Laura for sharing the "cocoa bean" moment last night!!! I feel years younger!

Chemo Day 1.5

Mike here. Thought I'd chime in on how it went today. In the morning Lisa spiked a fever at 103.8 which we later was attributed to a urinary tract infection and was probably masked by all the Motrin we were giving her. 11:10 AM was the first appointment which was a blood draw (from the port in her chest so, no pokes) Afterward was the appointment with the oncologist for chemo at 12:15 PM. While the treatment was painless the time sitting there, 6 hours, takes it's toll. Along with the chemo, Lisa was givin antibiotics to take care of the urinary infection. At about 3:00 PM she must have broke the fever because she was out and drenched in sweat. I didn't there was any way I was taking her home at that point. A short time later she asked to go to the bathroom and we put some dry clothes on her and she seemed to perk right up. By 6:00 PM shen was up and walking around better than she had in over a week. Go figure. We're back at the lake house and getting ready for another round tomorrow at 10:00 AM. With a little luck we'll get out of there by 4:00 PM.

The other suprise was all the medicine that we take home and each time there's another proceedure we need to do at home. I'm quickly learning that taking care of this little girl is going to be a full time job and then some. As Linda pointed out, it's overwhelming.

Thanks to Therese and Bill Shortt, my cousins, in South Lyon for the quick dental work. Thanks to the neighbors at the lake for their support, especially Scott for keeping the grass cut. Thanks to Slades back in Canton for cutting the grass there. Huge help guys, I can't thank you enough!

Chemo Day 1

So we begin. Not even sure where to start writing, my mind is just in a whirlwind.

Friday ended up being a very long day as I waited at the Lake House with the other kids for Lisa to come home. Mike took her to the dentist early in the morning and she had her cavity filled. They returned to the hospital for her MRI and bone scan. The day dragged out forever and they did not get home until after 7 pm. I was so excited for her to be out of the hospital, but Friday and Saturday were bittersweet. She was in pain and it was really hard for her to get around. She did a lot of sleeping and movie watching. We kept having to readjust her and help her back to sitting as she would slump over to the side. It was difficult for her to pull herself up into a sitting position....it's almost as if she had no control over her muscles. Even taking her on the boat Saturday (something she loves) did not help. The bumps were just too jarring for her and while we had a fun time, she was ready to get off after only a short time.

Sunday was a better day. She was able to get around and played. She takes Motrin ever three hours and as a reward for taking her medicine she gets to squirt someone with water. Visitors beware...she usually picks the newest person and those little syringes pack quite the punch...prepare to get wet.

So, today it begins. Mike will be taking her to chemo while I take the other kids to some of their own appointments. I'm guessing this will not be very traumatic for Lisa compared to the prior days. It seems pretty easy, they just hook her up and run the meds. I don't even think she'll feel the effect of them until a few days out....unless she has some weird allergic reaction (let' pray that doesn't happen!).Still, my heart races and I get pretty anxious knowing why she needs those meds and realizing we are just starting this long journey.

I'm feeling a bit desperate about all this. I can't seem to get my mind to stay in the moment and I keep leaping to the "what-ifs" which make me very anxious and throws me into panic and pity mode. This is a bad place for me and is really not productive. Knowing this, I need to constantly remind myself to stay in the now and live each moment for what it's worth. It's not going to be easy, but there really is no other option.