Tuesday, January 31, 2012

sigh...

Lisa is doing very well and feeling  pretty great. She is having some hearing loss that we need to get checked out and is on my never ending list of things to get done.  She is scheduled today for appts and tomorrow for scans.    She is happy, energetic and loving life.

I, on the other hand, am feeling frustrated and catch myself sighing a lot lately.   I can't seem to get anything done. Today would be the perfect example.  We knew Lisa was scheduled for scans this week.  We did not know until last night when we got a call from anesthesia that she was scheduled for a bone marrow biopsy today.  I called last night trying to get details only to be told she was on the schedule.   I was a bit frustrated because that tacks on another 3 hrs to the schedule today and means Lisa has to be put under for a 10 min procedure today and then tomorrow will be expected to lay still for a 2.5+ hr procedure.

Frustrated, I was sending emails and making calls like crazy this morning to get it all re-arranged.  Thankfully, I have the number straight to the head nuclear med tech. She was able to get the biopsy moved to tomorrow so they can sedate Lisa and have all the procedures done at one time making today a short day and tomorrow a long day (still better than two long days:)

You would think I would be thankful that I gained 3 hours of my day back, but instead I find myself sighing because things went from rushing to getting ready for the hospital to having a 7 year old standing there saying she's not going to school because she's ready for the hospital and wants to stay in her pajamas.  Fine.  But as I try and get my work done, this same 7 year old asked for (and got) a trip to Dunkin Donuts for a donut that she was supposed to eat quietly while I worked.  The donut is still sitting right next to me as I sigh and salivate and the 7 year old is running around the house not interested in the donut anymore.  We now have 45 minutes left until we go and the 7 year old has just bribed me out of a whole 10 cents if she gets her clothes and takes a shower.  She is now crawling on the floor looking for her dropped money.

Donut not eaten, shower not done, minimal work accomplished. I'm trying really hard to get things done...but, sigh...it's just not happening today:)

Thank goodness the sun is shining and its a warm 49 degrees here in Michigan...I think maybe I've got spring fever:)

Monday, January 23, 2012

A hello from Lisa

video

It's been a while since we've had any video of Lisa.  She kept bugging me tonight while I was working on my computer so we decided to make a video.

We will be doing scans next week and if things are stable since 2 weeks ago, Lisa will be put on the new study.  Because the study involves being injected with a virus, Lisa will not be able to go to school for 4 - 6 weeks.  Lisa has been hanging out with "Momma Monkey" lately and prepping Momma Monkey to once again take her place in school. Momma Monkey is from the  "There's a Monkey in my Chair program""  and provides Lisa and her classmates a way to stay connected.

Still keeping my fingers and toes crossed and hoping God grants us a miracle of a cure.  I cannot imagine life without Lisa.

Sunday, January 15, 2012

Miracle, one little bit at a time

Last week went very well.  The doctors said that scans showed the disease was less active in some areas!!  This is great news considering all we have been conditioned to hope for is that the disease does not progress. Wonderful!  Thank you God!  We will take our miracle one little bit at a time.
There is a study opening up that doctors are hopeful will be beneficial to Lisa.  It is the study that we talked about doing a year ago, but Lisa was still wearing a pull up at night.  The study is currently being revised to add a chemo agent to it.  The hope is that a spot will open this week and Lisa can be enrolled into the study.  Of course, it comes down to timing.  We need her to have disease, but not too much or too little.  Her counts have to be in good shape along with general health, etc. She also needs to have scans that have been completed 2 weeks prior to her starting .   

Based on all the timing issues of the study, the docs decided that two days of chemo would be all Lisa would get this last week.  The hope is that this would be enough chemo to keep her disease from increasing, but not enough to knock her counts down too low.  So far, so good. She's been happy and playful all week and weekend. If she gets on study, she'll have to repeat the scans she just did to be within the two week time frame and then will start on the study the first week of February. 
We will know about study spot by end of this week....fingers crossed....God has already shown his power by showing improvement on the scans...hoping he chooses to bless us with THE miracle and removes all the cancer from her body this year:)

Sunday, January 8, 2012

Scans look better

That is the message we got from Lisa's nurse last week.  We will find out what exactly "better" means at Lisa's appointment on Tuesday.   To hear those words definitely buoys our spirits and makes me give thanks to God for listening to my prayers.  Since the 1st of the year, my prayers have been quite  repetitive and went something like this.."I just want the miracle, I just want Lisa's cancer to go away...no explanations, no reasons necessary....just that it is gone from her body...and we can put these past three years behind us"

When I think about the close call Lisa had in October and hear about other cancer patients who have lost the fight, I know we are truly blessed and that God has been watching over Lisa.  She is such a wonderful child, I just wish she did not have such a huge cross to carry.  I cannot imagine life without her, so I will continue my mantra and prayers to God and ask for the miracle of a cure.

Please continue to pray for Lisa as we find out what treatment options are available to her and that which ever treatment we choose is not too harsh on her body.

Hope everyone has a great week as we settle back into our post-holiday routines!

Sunday, January 1, 2012

The Year In The Review

In January Lisa began the year on a sour note with scans showing the disease had spread and chemo needed to begin right away. She ended the month dancing to a different tune in her first ballet class and a trip to Muskegon with her sibs for a weekend winter camp.

February began with more chemo and getting admitted to MOTT a couple times due to flu and dehydration. She had a rough week or two but scans later in the month indicated a slight decrease of the disease. She also began loosing her hair again.

March came and went quickly with a couple rounds of chemo that Lisa sailed right through with little side effects.

April scans brought good news that that the chemo was still working and we celebrated the news with a trip to Frankenmuth, where the seed of the second BLAST fundraiser germinated.

It was May and we were off to chemo again. Lisa endured another hair cut and became a star at a fashion show.

June began with with one BLAST and ended with a slew of other blasts.

July was quiet but Lisa did start a new chemo regimen.

In August Lisa was able to begin participating in a new study but by mid-month we received news that the disease was again progressing. We did manage to make it to N.C. for our vacation though. On the 31st we celebrated Lisa's 7th birthday.

September came and went with little news but by the end of the month we were holding our breadth for the next round of scan results.

In October Linda reentered the workforce, but Lisa's scans show the cancer was nearly out of control. After a miserable couple weeks we discovered Lisa had a medium sized tumor in brain that needed to be addressed immediately. Another hair cut, another operation, and another recovery. What a warrior!

November came and went with 12 sessions of radiation.

December found us drained but we rallied and had a great month filled with family and friends and holiday parties and a couple trips to the new MOTT. We're thankful to so many that have helped us through the year.

2012 begins with a week off for the kids and I (Mike). I'm not sure yet what we're doing this week but I'm not sitting around the house for the next nine days. I'll probably load the car with a few of the kids and head north. The second week of January is a scan week for Lisa who as I'm typing this is hopping around the family room looking and feeling "awesome". Let's pray and hope and make 2012 a great year.

Thank you so much everyone.