Please Pray, Pray, Pray

Please pray....Lisa is not doing well....she has had pain in her back ever since bone marrow biopsy last week.  The pain progressed to her legs this weekend and walking became more and more difficult.  Today I went to check on her before I left for work and she looked awful.  She had spiked a temperature and could not get out of bed.

I took her to ER where we spent most of the day until we were finally admitted to the 7th floor at about 3:00.  She is being treated for possible infection but until blood tests come back we have no way of knowing what the problem is...an infection or cancer progressing. We now wait to see what cultures show over next few days and whether she can regain her strength. This situation has made isolation radiation too risky and now we wait to see if she can recover from this to determine next steps.

Her spirit is still strong, but her body is aching.  I have much more to say, but I cannot write, the tears have overcome me and the fear has me shutting down.

Pray, pray, pray....it cannot be her time....pray, don't stop believing....BELIEVE, PRAY, BEG...please.

Scan Results:)

Lisa's nurse shared the news yesterday:
CT scan: stable
MRI of head:stable
MIBG scan: mixed bag.....more uptake in some of the bony areas, but there was one small are of improvement?!

We are still waiting for the doctor to review the finding but based on what he told me Tuesday, I'm pretty sure that Lisa will be doing the MIBG Radiation/Isolation treatment next week.  Her brain scan, which was his biggest concern, had no new areas of activity.

How the heck there was an improvement in one are of her leg bone is a total mystery.  She's not had any treatment for over 5 weeks.   For a few moments, I indulge in the fantasy that her body has finally figured out how to cure itself and if we just quit all treatment her body would do it's own thing and cure its self.  Reality crashes into the fantasy when I think about all the other areas that showed an increase in growth....most likely, that area of improvement was just a misread of a scan or some other anomaly....but will take improvement any way we can get it.

Soooooo, unless the doctor says differently, next week Wed Lisa will be admitted for high dose MIBG radiation and be in isolation.  Looks like my weekend will be spent putting together some items that she can take into the room but won't miss when she has to leave them behind:)

Fingers crossed and prayers going up that Lisa sails thru this treatment as easily as she did before.

Scans and Biopsy Today - Wednesday August 1

Mike here:
Bone Marrow Biopsy, CT scan, MRI, and MIBG scans today.  These are pretty routine for our little warrior but these will also confirm Lisa's eligibility for next week's MIBG therapy.  Linda's meeting yesterday with the doctors left her with the nagging feeling that Lisa may not be eligible for the therapy.

The problem is that Lisa must show evidence of disease to participate in the treatment but if there is disease in the brain then she will not be eligible.   We know there is a mass in the brain that we dealt with last fall and that remnants of it remain.  What we are unsure of is whether or not that mass is cancerous.  Residuals of her radiation treatment in the fall and small daily doses of steroids are able to keep the mass under control,  for the moment.

The risk during MIBG therapy comes while Lisa remains highly irradiated. If a problem with the mass in her brain emerges, the radiation is high enough to preclude any emergency intervention that would be necessary.

So that's where we are today. I've got my marching orders and I will be at Mott shortly. Send her your very best.

"Cruiseitis'

Cruiseitis - general feeling of lethargy and ill-being experienced after having enjoyed a wonderful time on a cruise.

Our cruise ended on Saturday, drive home from Boston ended "midnight" Sunday, "Cruiseitis" commenced when we got off the ship and is just now starting to wear off.

The teens enjoyed their freedom and running around the ship where the action never stopped.  They had fun ordering new foods at dinner knowing if they didn't like it they could order something else or just hit up the ice cream and pizza stations that operated all hours.

Lisa enjoyed running around the ship with Mike or I in tow and proving us wrong numerous times on how to get somewhere.  I still don't know how she figured out the lay of the land so quickly!

Mike and I enjoyed the food:), the shows, and most of all...the 62 family members on-board with us:)

Maranda, Chrissy and I got off in the port of St. John to do some zip lining with some of the family members.  It was a wonderful treat, however the decision to walk back the "less than 2 miles" was not the best one for me.  That was the longest 2 miles ever and the fact that we were keeping up with the pace our long-legged family members didn't help.  Good thing there was a ship buffet waiting for us when we got back....despite our exhaustion, we managed to go directly there and "refuel" ourselves:)

Chrissy, Thomas and I got of in the port of Halifax and enjoyed looking at the Tall Ships.  Chrissy, our adventure loving girl and pirate at heart, was ready to scurry up the ropes and help take in the sails on the one ship that arrived as we were walking by.  We enjoyed strolling thru Halifax and going thru their Maritime Museum....although I seriously question why the heck we spent over and hour exploring the Titantic exhibit when we had to get back on a big ship:)

Mike and Lisa chose to never leave the boat.  They enjoyed using the pool and other activities when the crowds were away.  I have to say they both also really liked our room and found the bed so comfortable that they made sure to get our money's worth by having a daily nap:)

A good time was had by all and we are just now recovering and trying to enjoy the last few weeks before all the school activities begin:(  

This week is hospital free:)  but next week will be scans and the following week Lisa is scheduled for MIBG radiation (this is the 3-5 day isolation treatment where she is in a room and we have to stay on the other side of the wall).  We are once again hopeful that this brings us good results and beats back the cancer so we can all continue to enjoy living life.

Keep the prayers coming!

Not the way we planned to kick off our cruise!

Hello all!

I know the posts have been far and in between but that is because we have been trying to keep busy.  We kicked off the summer with 3 weeks at the lakehouse that was filled with fun,  friends, graduation partys, Chrissy's 13th birthday, dancing at Camp Dearborn to our favorite band, wake boarding lessons for the whole family and of course, routine trips to the hospital for chemo. 

We enjoyed July 4th at the lakehouse and watched from the middle of the lake while neighbors lit off fireworks on all sides.  The last 10 days have been filled with excitement and anticipation as we prepared for our family cruise that includes 60+ relatives on Mike's side of the family.  The cruise departs from Boston and goes north to Nova Scotia. 

We (me) packed until late in the night Friday. We left early Saturday morning for Niagara Falls, CA a little side trip on our way to Boston.  Things went well except for Lisa continuous complaints about a headache which had started Friday night and persisted through our drive north.  We gave her meds hoping to take care of the pain.  The meds seem to keep the pain from getting too intense but it never seemed to leave her.  Cancer Warrior that she is, she toughed it out and even endured the long, hot, sweaty wait in line to ride Maid of the Mist at Niagara Falls.  Once we were done with that site seeing excursion, we were pretty much done....well done, from the heat.  We had a little bit of ice cream and then headed back to the room.  The older kids went swimming and Lisa took a long nap.

Her headache persisted even though we continued to give her pain killers.  The drive to Boston was uneventful except for the growing stress of "what if" Lisa's headaches were a repeat of October.  Deciding to play it safe Mike dropped Lisa and I off at Boston Children's hospital and took the rest of the kids to our hotel.  The hospital was wonderful and ran scans and tests and were able to confirm that there was nothing imminent appearing on scans.  Thank God!  What a relief.  I texted Mike to come get us and finally felt a surge of excitement knowing that we are going on a cruise.  Yeah!  It was not the way I planned to kick off the cruise, but the sense of relief I now feel was well worth the 5 hours spent in the ER.

We are getting ready to head off to the ship now where we will be without Internet connection or cell phone for a week.

Hope all of you are having  good summer.  Keep us in your thoughts and pray that we have a safe and healthy trip.

Bon Voyage:)

Chemo Round 2, day 1 ..is our warrior geting weary?

Sorry I have not written in a while.  Emotionally I have not had it in me.  Today began another cycle of chemo.  It was off to a rough start.  Lisa was ready to go this morning and there were no problems initially.  As we neared the hospital, she asked if she was getting chemo.  When I said yes, hysteria kicked in and she started to cry.  As she chucked her baby at me from the back of the car she said “I don’t want chemo, I just want to go home.” 

Once the car was parked, Lisa refused to get out.  I managed to keep my cool as my mind raced trying to figure out exactly what is the right protocol for this.  Seriously?  Do you just tell your child to get out of the car and to get treatment that you can’t guarantee is fighting their disease and could make them feel like hell? Do you scoop them in your arms and run far, far away from the nightmare.  As questions went thru my head and I tried to sort it out, I just held my breath and physically dragged Lisa from the car.  Sympathetic looks from parents on the elevator had me questioning whether a chemo kid should be treated any differently from a healthy kid who has to go for their shots….what exactly are you supposed to do. 

As usual, follow your instincts and “doing what you got to do” was how we got thru the moment.    I chose to forego the lab and went directly to infusion where I let them know Lisa was having a bad day and would need her blood draw done with them and that we were way behind schedule.  We were in the waiting room for ½ hour where I cuddled Lisa while she curled up and refused to make eye contact or conversation with anyone.  After about 45 minutes she started relaxing a bit.  At the hour mark, we got into a room and the situation was explained to her doc and nurse as Lisa crawled under a blanket and refused to talk to them.  We opted for the slow and easy pace and brought in one of the child life specialists who was able to engage Lisa in a game on the I-pad.  After about ½ of this, Lisa was back to being herself and allowed her nurse to access her and draw her blood. We then moved to the playroom where Lisa painted and did crafts and had no issues with taking her oral chemo or letting her nurse examine her and things went on as “normal”.

 It’s heart-wrenching when she has these moments.  Today’s episode was even more disturbing to me because it comes so quickly after an upset Lisa created on the playground a little over a week ago.  Apparently, during recess, Lisa chose to announce to her little friends that she “was going to die in 4 weeks”.  This was distressing to all who heard and suddenly Lisa’s teacher was surrounded by a gaggle of crying girls.  They were escorted to the principal’s office who was able to defuse the situation with the wise words of “no one knows when they are going to die” and talk of more happy moments and memories.  When we asked Lisa about the situation, she merely said she thought she was going to die and wanted to go see Grandpa Mac and Grandma Yesh.  Hard words to hear and even harder to figure out what exactly is going thru her head.  I hope it is merely a 7 year old trying to make sense of the world and not those of a cancer patient that has some intuition about their disease or a warrior who is getty weary.

 So….lots of emotional upheaval these past few weeks.

 On a positive note, a great, big “Job Well Done” to Tom who graduated from the 8^th grade and received two awards at the 8^th grade ceremony.   The first award was for Positive Behavior Support and the other award was for his hard work in Social Studies.    This award saved Tom from missing the8th grade school trip to Washington, DC.  Just prior to going to Tom’s award ceremony, I had drafted an email to his teachers saying that unfortunately due to missing work (an ongoing problem between Tom and I) he would not be able to go to his 8^th Grade Washington DC trip and they should gift his trip to another student.  Neither Tom nor I were happy with the situation and I kept asking Tom to give me a reason, any reason, that proved he deserved to go even though he was missing work.   An hour later, he had his reason.  He was one of the 4 students chosen by all the teachers from 180 students going Washington, DC to represent Central Middle School and lay a wreath at the Vietnam Memorial.  Way to save yourself …BRAVO!  He loved the trip and it was a great experience for him.  Hopefully his close call at losing the trip will motivate him to turn in his work on time as he enters the doors of high school in the fall.

Hope everyone is settling into summer.  Keep praying and keep living in the moment.

Sunday 6/3 - Chemo, Day 5

Lisa started chemo on Wednesday and today is the last treatment for this round. She'll endure another in a few weeks and then an MIBG therapy late July. Lisa is doing great with her treatments. She either plays with her peeps (nurses and\or Child Life Specialists), takes a nap, or watches a movie during treatment with lasts a few hours. When she gets back home she's running the house like any normal 7 year old. We're all looking forward to the end of school and spending some time at the cottage. We also have a cruise planned, and the kids have summer camp. We might try to squeeze in a trip down to North Carolina and Michigan Adventure at some point too. As ususal we're trying to make the most of the 80 or so days of summer vacation.