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.

Friday was a long day. Lisa had a bone scan and another MRI, this one on her spine. She was sedated for both and it takes her a long time after sedation to get back to her normal self. Normal being relative to her current condition. Normal lately means she in a lot of pain and can't sit up or lay down on her own and walking nearly impossible.

It's all relative

HAPPY BIRTHDAY TO CHRISTINA...9 YEARS OLD TODAY!
Maranda and the babysitter/zookeeper have decorated the house and we've got presents and goodies....it's going to be a good day to turn 9!

HAPPY ANNIVERSARY TO MY HUBBY...16 YEARS TODAY!
We've had our share of challenges and we've managed to survive...what else can you do? This is just one more challenge that will make us stronger and help us grow. Please God bless us and give us strength to work through this and still appreciate and love one another...this is a heavy cross you've given us to bear, but as we always say "Allah will provide"

Yesterday was an easy day for Lisa. I find it interesting that the definition of "easy" has a whole new meaning from what it had two weeks ago....amazing how quickly humans adapt to a situation....I guess it is all relative to what you've personally experienced.

Hi to all the vistors I missed who came to see Lisa yesterday. We were glad that Dixie (Lisa, Thomas, and Christina's oldest sister) was able to come out and visit with Lisa....it's a long drive from Marlette for her and her family but they made the trip.

Today Mike will take Lisa to the dentist to make sure she gets any cavities filled. Thanks to Therese and Bill for helping us out with this. Once they return to the hospital, Lisa will get a bone scan and another MRI, the final tests to make sure they have all the markers and info they need. After the tests are run, she should be able to come home for the weekend. She will start chemo on Monday and that will be done as an outpatient for this round of chemo....so it will still be long days at the hospital next week, but if all goes well, we can all be home at night.

Hopefully Mike and I can meet with the doctors while she is under for the procedures to discuss what our life will be like. With both of us planning on continuing work, we need to figure out exactly when we will need to be with Lisa. The days of chemo treatment are obvious, but what are the days in between going to be like. Will she be groggy? Will she be ill? Will she be bedridden? Will she be running around like a nut job because she's three and kids handle this stuff so much better?

We have our babysitter, aka Zookeeper, aka Lisa Foster who is wonderful and was already signed up to watch the kids for summer before all this happened. We're just not sure how much extra care Lisa is going to require and how to handle that.

So....we are moving forward...trying to stay positive....working to figure out how all this works and what our norm will be as a family....instead of being a family with foster kids, we are now a family coping with cancer.

Keep praying...keep living....keep enjoying life to it's fullest!

Love, Mike, Linda, Maranda, Thomas, Christina, Lisa

Going Forward

Ok...so yesterday was a pretty groggy day for Lisa, they gave her anesthesia and did the MIBG scan. The bad news is it lit up pretty much everywhere, meaning she has cancer cells in many, many places...her spine, clavicles, ribs, pelvis, legs, shoulder....the good news is because she lit up almost all the areas, she doesn't have to get the second scan done today (probably because there is nothing left to light up). She was pretty cranky after and didn't eat much.

The 5:00 meeting went well. Thank you so much to Uncle Tony, Larry and Matt who joined us as extra ears and brains to help us decipher. Dr. Castle did a very good job of explaining the cancer and the treatment options available. Basically there is a standard of care and a trial standard of care (it has been well tested and many of the doctors believe this will become the new standard in the future). Both treatments involve 6 cycles of chemo which take place every 21 days. The standard vs. trial differs in the "cocktail" of drugs they give. With the trial, the drugs (which have been used for years) have proven successful in treating other cancers. If the chemo is successful in shrinking the tumors, we then will go back to the drawing board to figure out the next steps. There are some other options out there, but Docs/researchers are not as solidified on what is the best way to beat it. They have the tried and true standard which statistics show as only 20% successful, but there are some other options available that we might want to consider. At this point, we will cross that bridge when we get to it.

So....today should be an easy day for Lisa..and according to Mike who was with her last night, she's up and about. She will be seen by a dentist to get cavities filled (could lead to infection if not taken care of) and to get hearing tested for baseline readings.

I will be adding a link for those of you who would like to read the treatment plan in detail. The first pages give really good explanations about the phases of treatment.

Please keep up the prayers....the chemo will last for about 5 mos and while aggressive, it really is the easiest portion of the treatment. If Lisa responds well to it, her fight is far from over, because the next phases are much tougher.

Again, thank you to all of you for your prayers and help. We could not do this with out everyone's support. Many of you have provided meals and gifts and we are truly grateful. I've heard that some of you are feeling bad because you've not had a chance to "help out", don't despair, just by reading and posting to this blog you are helping us by reminding us we are not alone. Meals and other things we need will most likely be ongoing for this long, tough battle. While we are adjusting and starting to find our new "normal" we still need your love, support and help.

Thank You

P.S. A special thank you to my co-workers at Borders. They have been awesome! Their thoughts and concern have helped me get through the day. They are doing everything they can to help me cope with my personal life, as well as, supporting me in my work responsibilities. I am so blessed to have joined Borders when I did....you guys are great!

Let's shoot Daddy

It's not like it sounds...really. At the 2 am - 3 am witching hour last night where Lisa can't decide if she wants to sleep, cry or play, we discovered that the medicine syringes they use to give her oral meds work great for shooting water.

As she woke this morning, she smiled and said "Let's shoot Daddy".

Things are going well given the circumstances. She had the dye injected yesterday for the MIBG scan and will have a scan done today and tomorrow to determine what areas "light up". This will give us more details about where the cancer is. Friday she is scheduled for a bone scan...again will give us more details. The unfortunate thing is because she is so young, she will have to be given anesthesia so she will be still....that's okay...I'm ready for the techs and questions this time...no falling on her face today!

This evening at 5 will be the discussion with the doctors as to the best protocol of treatment. There is the standard one that they've talked to us about and one that is basically a trial course (at least that's what I think they are saying). We have a few family members and friends who will be joining us at 5 to help translate what exactly is being said and ask questions.

Thank you to all of you who are reading, posting, praying, bringing food, offering services. Your love and support is uplifting and gives me a sense of security. I know there are many people rooting for Lisa and we are keeping the angels, saints and God busy! I keep thinking of that movie Bruce Almighty with Jim Carrey where he gets to be God and all the emails and voices that plague him as he tries to answer the prayer request...I like to think they are all going crazy up there as all the prayer request come in for Lisa.

Ok...well...off to start the day...Lisa is up and giggling and ready to play.

New Day

Well yesterday was a lot of testing and one groggy girl. In the morning, she had a PET scan (??) they shot her up with some radioactive stuff and did some xrays. After that, they drew blood at 2 hour and 4 hour point. She was pretty edgy so they gave her anxiety meds to calm her down when they drew her blood. They worked good, but she was a bit loopy and pretty tired.

At 2:45 she went down to anesthia to get prepped for getting her "central line" put in and a stint for her kidney. She was screaming up a storm and we were surrounded by techs who kept asking me stupid questions (do they not read the chart!). Lisa was squirming so much and wanted out of my lap; trying to navigate in the small curtained area with a bunch of people around was impossible. I stood up and got her to standing when a tech asked me a question. I turned to look at him and let go of Lisa's hand, she took one step and fell face forward. Luckily she didn't hurt herself. All the techs were looking at me in horror....I tried explaining that she has a lot of leg pain and she was probably numb because of laying in bed all day...but they all just stood there gaping. Anyway.....she wouldn't settle down and they kept glancing at their watches. I finally just told them to hook her up...they gave her some stuff to calm her and I handed her to one of the young techs and told him he could carry her, put her on a bed or use their wagon but she wasn't going to get any calmer until they put her under.

4:45 Doctor let us know line was in and she was doing well. 5:45 Doctor let us know stint was in kidney and hopefully wouldn't be too much of an irritant for her. She was in recover until about 6:45 and then we brought her back to her room. She managed to eat some pears before passing out for the night. They ended up hooking her up to a blood transfusion (only after having a sign another form re: all the possible things that could go wrong) because her count was down.

This morning she seems a lot more peppy. She is schedule to have the MiBG
http://www.cc.nih.gov/ccc/patient_education/procdiag/mibg.pdf test this afternoon around 3:00. Doctor actually told Mike he could take her out of hospital for few hours. Unfortunately, he doesn't have a car and I'm at work...oh well, they can go to the playrooms...at least she isn't getting poked (well, except for the morning blood draw) this morning.

We will be meeting with doctors tommorrow afternoon to discuss treatment options. Keep praying....we've got a huge decision coming our way.

Rough Night

Well, last night was a little rough. While Lisa was willing to play along last week with the docs and nurses, she's doesn't want anything to do with them. As soon as they walk in the room she starts screaming and she's not being bribed with stickers any more.

I think her pain has been increasing and while we been dosing her every 3 hours with Motrin, it may be time for something stronger, especially at night. She wakes up at 3:00 am and just starts screaming and crying. Could be situational, could be pain....hard to tell, she's so upset she doesn't make any sense.

While we were thinking treatments might start today or tommorrow, it looks like we will be waiting until later in the week. Still a few more baseline tests to run AND the head doctor said there are some concerns about the treatment plan...seems to be some differences of opinion amoung the medical staff as to the best protocol to follow. There's the standard one defined for neuroblastoma and a medical trial one...both having plus and minus. Docs are planning to meet Wed morning to map out the different options and determine best options, then it will be explained to us and we will have to decide which route to follow...basically trying to pick the best of the evils...does not sound good.

Diagnosis

Well..the diagnosis is very frightening...Neuroblastoma---stage 4. Lisa has masses adjacent to spine in her stomach, lungs, pelvis and leg bone. There are some lymph node enlargements in her lungs. It is also in her bone marrow.

The treatment for Neroblastoma is very aggressive and while it will most likely shrink the tumors, the drugs are very toxic and can cause other problems.

Neuroblastoma is a tough cancer to beat....only 20% become cancer free for life. Looks like most children might beat it for a while (clean for 2-3 years after initial treatment), but then it is back and many times they lose the battle the second time around.

Lisa is on a leave from the hospital for the weekend. So long as we keep her dosed on Tylenol, she is her normal happy self. It's hard to believe that all this stuff is happening in her little body. It's very upsetting to know that to help our daughter we basically have to poison her.

We will return to the hospital Sunday night so she can get her IV hooked up again. Monday will be a day of more tests to make sure kidneys are working optimally (probably will require some type of shunt because her one of the masses is compressing her kidney and it is not draining completely). She also will be getting a port put in for her to receive medicines, have blood drawn, etc.

We expect to start the chemo this week, possibly Tuesday. There will be at least 4 more chemo treatments scheduled every 21 days. Each chemo treatment will require 3-5 days of hospitalization. After the cycles of chemo is completed she will have a major chemo treatment with a bone marrow transplant (using her cells that have been collected throughout the process) which will require hospitalization for 3-6 weeks. After that there will be radiation treatment.

This looks to be lonnnnnnnnngggg, tiring, scary, sad, painful road. I pray for faith, strength, dignity and courage to help us through this. I pray that we can keep our eyes on today and our thoughts from tomorrow, because there are just too many unknowns.

Preliminary Diagnosis

Okay...not the "growth" I had in mind when I set this up....but perhaps an easy way to keep people updated.

After 3 months of intermittent leg pain and limping that comes and goes and after many blood tests, xrays and scans the doctors at U of M admitted Lisa for more testing yesterday. Based on early indicators they are 75% certain she has some type of cancer most likely leukemia or neuroblastoma. They will run a few more tests today to determine which type of cancer (reading between the various "doctors lines" from yesterday, it does not seem to be a question of "does she have cancer" it is a question of "what kind of cancer")



So...Mike and her spent last night at hospital. Today they will do a CT scan and test her bone marrow. She will most likely stay there again tonight. Final diagnosis will dictate treatment. If leukemia, they will most likely start treatment immediately meaning she won't be released until next week. If neuroblastoma, she will need more testing and they will probably send her home until the test can be done and they can determine treatment.



Lisa is still her cute little self. She's put up with a lot of poking and still manages to giggle when she feels okay. The leg pain was pretty bad this weekend and she keeps spiking fevers so she does get cranky when her temps up at 101 (who wouldn't) The best I can describe is she looks achy and she hurts when she moves. Once she gets doped up on Tylenol, she's up and about as usual with the limp that started all this.

Welcome

Perhaps this is a way to finally keep a journal of my kids growth