Lisa turns 8!

Today is Lisa's 8th birthday.   Tomorrow is last day of radiation.  Scans will be in another week.

Lisa has been doing a lot of sleeping while the other kids have been getting in their last bits of summer fun.  The last week was spent going to their schools for their  "orientations".  Maranda and Chrissy's schools are status quo and no surprises.  Thomas starts highschool so we spent a few hours there getting him acclimated and making sure he was in the right type of classes with teachers who can work with his learning disabilities and help him be successful.  Lisa will be going to the same school but due to some school closings she has a new principal and there will be new teachers and students throughout the building.   We've got everyone squared away and ready to go and I think things should go smoothly next week...fingers crossed:)

Our focus right now is joining forces to raise awareness about Childhood Cancer.  Tomorrow is September...time to get your Gold On!!

Life is a Bumpy Cake

I make plans, God laughs.  I change my plans and God laughs harder.  All these little bumps laid before us are what they are. We can attempt to avoid them or we can slow down look a little closer.  Life IS a bumpy cake and sometimes, as with the cake, those bumps are the best part.

Eight years ago on August 20th I brought home two special little kids named Thomas (6) and Christina (5). I can vividly remember picking them up at the agency and thinking, “these kids are so adorable there's no way they’ll be with us very long”.  Less than two weeks later we picked up their 5 day old sister Lisa at a Sunoco station just North of Ann Arbor. Seriously.  So there we were at home later in the evening amazed at going from one child to four in the span of about ten days, and here we are 8 years later bumping along. Four kids, four bumps on a bumpy cake, coincidence?

So as you can see our four little bumps have grown. (Maranda is away with her cousin at the time of this photo) They are undoubtedly the best part because without them we’d be left with just a boring chocolate cake. Boring! There were, are, and will be more bumps (A certain neurotic Dalmatian named Chief comes to mind, BUMP) and we’ll celebrate each bump in turn. Maybe with a bumpy cake.

I’m recalling one unrelated bump on a hunting trip years ago.  It was dubbed an “incident” and it involved a leaky propane tank on a gas grill. After the flames were all extinguished and everyone was accounted for, I remarked “it’s starting to get funny now”.   I hope that when I look back on all the bumps I can still make the same remark because sure enough God will still be laughing.

--Mike

We are having a BLAST:)

Lisa has been doing well, not great, not even comfortable all the time, but well in a "managing to keep the pain under control, making the best out of daily radiation, alternating playing and cat-napping every few hours" 7 year old way. We still have at least 2 more weeks of radiation to do and she has been complaining about new pain in her knee. They did an x-ray of her leg last week and we should know tomorrow if we need to radiate an area of her leg as well.

She is truly a fighter and we are all crossing our fingers and holding our breath in hopes that this extensive round of radiation to her spine will buy us more time...lots if we have our wish. I'm still believing and hoping for a miracle.

In honor or Lisa, and all the other childhood cancer warriors, we are having a BLAST!   BLAST 3 to be specific. BLAST is the fundraiser we did the last two years in and effort to raise funds for, and awareness about Childhood Cancer. I won't preach here about the statistics nor the limited funding directed to Childhood Cancer, but know that Childhood Cancer gets a very small percentage of funding for research and is the number one disease killer of children.

BLAST 3 will be on Sept 15 at St John Neumann Church. There will be a spaghetti dinner, bake sale, family fun games and a euchre tournament.

 

We picked September this year to coincide with the month that is dedicated nationally to raising awareness about childhood cancer and we will be aiming to color our world and yours in gold ...the color of the childhood cancer awareness ribbons. Our goal is to one day have the gold ribbon as universally recognized as the pink ribbon.

Check out the website www.BLASTnb.com  for more details  and please plan on joining us:)

For those of you interested in helping, we are in need of:

• Help with website coding
• 100 Colored Copies of different documents
• Gently used children's books and stuffed animals for prizes
• Raffle donations or baskets
• Volunteers for Sep 15
• Individuals who can spread the word to community schools and sports teams and encourage them to wear gold during the month of Sept

Please email info@BLASTnb.com for more information, questions or suggestions.  Thanks!

 

Update

It's been a busy week and Lisa remains comfortable, active, happy, and by most outward appearances nobody would suspect her predicament.  She’s sleeping a little more, going to radiation therapy M-F, and taking pain medicine regularly which may account for her sleepiness.  Please continue to send her your very best while she is getting treatment.

Yesterday we met with a representative from Angela Hospice. It was emotional to say the least. We may or may not accept their assistance at this time. We are still deciding.  All of the kids were present during the discussion and affected by the candor of the discussion.  Maranda was moved to tears and later in the evening poured her emotion onto paper. It was so beautiful I had to share.

Surely, it is the prayers

Well, I'm all black and blue....from pinching myself. I cannot believe we are being discharged today. As I look at my daughter who is walking around caring for her "baby" and is happy as can be, I am still shaking from the memory of the child I carried in here just a short 4 days ago. A child who was in severe pain and incapacitated by the cancer in her leg bones, pelvic bones, shoulder, bone marrow, spine..... I suppose we could give credit to all the meds; ones that reduce inflammation, ones that relieve pain, and chemo and radiation that attempt to beat the cancer back....but surely, it really must be the prayers. As I attempt to wrap my head around the events, I still cannot make sense of the what or the how. How did we go from a "mixed bag" of results to "extensive" involvement? Apparently, part of it was due to the type of scans done. Following normal protocol she had her MIBG Scan, CT scan and bone marrow biopsy. An MRI of the spine was not part of the normal regimen. I find that a little surprising given the known progression of this type of cancer and doctors repeated suspicions after the brain activity last year that spine would be the next place Neuroblastoma would show its ugly head. I wonder had we been doing a MRI of the spine regularly if we would have known sooner and been able to treat accordingly. I most certainly will be asking the doctors about that. Not much we can do about the past except to learn from it and move forward. While Lisa looks and feels much better, the knowledge that her body is riddled with more cancer than ever before is heart-wrenching and terrifying. The "what-if" and "when" circle my brain. I am not ready to let go...but are we ever??? I say that and then start to wonder why us? Not "why us, cancer?" but "why us, blessed with more days?" Knowing all the other warriors who have fought and prayed but lost the battle makes me wonder why us? Why have we been blessed with more time and how do continue to be the recipients of those blessings? I know the other families have faith and believe just as we and all our readers do...so why are those children now gone? I by no means want to question our blessings but do find I'm holding my breath wondering how long I have my daughter? Honestly I never want to be at the point where things are so bad and painful that I'm ready to let her go. I want her to grow up, go to college, get a job, get married and have a real baby that she can walk around caring for. This battle with Neuroblastoma is on-going but I will take that rather than it being over, because over most likely means cancer is the winner and I'm not ready to accept defeat. So, as faith teaches us, I will curb my questions and wondering why and accept God's Graces and believe that he will continue to bless us. Please continue to pray because even though Lisa looks so good, her little body is fighting a major war with an opponent who is not likely to surrender and the only way we are going to win this war is if God chooses to make us the victors. Live life fully...don't stop believing...keep on praying.

She is looking better

Things seem better. Last night was a bit rough but we kept pushing the pain meds, upped Lisa’s steroids and started her on chemo. A grumpy morning turned into a good afternoon. I’m not convinced it was the meds, I think it had to do with the prayers and Ms. Lisa who came to visit. Princess Lisa has a special bond with Ms. Lisa and seems to always perk up when she is around. I’m starting to think we should bottle Ms. Lisa’s spit or something and transfuse it into Princess Lisa. When Ms. Lisa came in the room, the princess smiled, sat up and proceeded to eat, talk, play, get out of bed, walk to the bathroom and went for a spin in her wheelchair. Princess Lisa was her bubbly smiling bossy self for a good 3-4 hours. Once Ms. Lisa left, Princess Lisa took a few cat naps and was game to go out and check out the Motts Thursday night pizza party for a few minutes. While she is still having pain, we seem to be getting a much better handle on it. The elation of seeing her feeling better and getting about is counteracted by the heartache of having to meet with the palliative care team and discuss the options for assuring her comfort while they assess our grip on reality and mental ability to cope with the looming “end” based on statistics. That being said…there is still hope. The radiologist spoke with me tonight and he seemed confident that radiation can reduce the cancer in the spine. If he is correct and Lisa can handle the chemo and radiation the next two weeks, there is hope that she will go home and be able to be active and pain free….the unanswered question is for how long. As with all of us, there is no answer to that question but cancer sure makes us ask it a lot more. She will receive chemo for one more day and radiation starts tomorrow at 7am (ugh!). The current plan is she will stay in here to assess how she handles new pain meds, the chemo and the radiation. If all goes well, she will most likely coming home on Monday. It is now midnight and princess Lisa has decided it is a good time to color. Her nurse was in and asking her if she had pain and she said “maayyybbeee”. I said she was a “Pain in the butt”. Lisa didn’t miss a beat and retorted “No, pain in the ass”. Good Night!! Keep the prayers coming. Don’t stop believing.

MRI Results

Lisa's latest scans confirm that there is new disease [Neuroblastoma] evident in the spine as well as soft tissue growth around the spine.  Additionally there is new soft tissue growth in the neck area.

So the plan is this: (1) Lisa will start chemo tonight and continue again on Thursday and Friday. (2) She will begin radiation therapy Thursday to target the aggressive growth around the spine. (3) We'll have to begin pain management regimen and palliative care.

She certainly won't be discharged until the fever subsides for more than 24 hours.  She spiked to 103.1 coming out of the MRI, which will keep her her at least until tomorrow evening but I seriously doubt we'll get out before the weekend.

So there's where we are at.  Please continue to send Lisa your best. We'll update the blog as we get more to post.

Prayer chain

I was just getting ready to head out the door, but have been stopped by a very loud nagging in my head that has directed me to post a request for a prayer chain.  My mother always said when two or more people pray together God will answer. I ask that all those of you who are reading, please set your watches for 11am, 2pm, 5pm and 8pm est today and say a prayer for Lisa.  Pray that she recovers from this and is able to have many, many more pain-free, healthy quality days with us on earth. 

Mike's update from the night was as follows:

She’s resting and sleeping so I’m guessing that her pain is manageable while she is laying still. She did get up to go to the bathroom twice during the night with a lot of pain. She’s very unsteady too but that is in part due to the heavy meds. She did wet the bed a little the first time so she’s out of underwear and pants and into those peach diapers. The second time the diaper was wet too.

Last morphine was given at 11PM last night. After midnight her breathing slowed to only 7 breaths per minute, her oxygen level was still good, but they’re temporarily holding off on the morphine so she’s not too out of it. She’s not complaining and resting quietly.

She had a fever of 101.3 this morning at about 5:30 so they gave her Tylenol.

And she just asked me for a hug.

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.