Update on Lisa 12/15/2012

December 16, 2012

But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

ISAIAH 43:12

Dear Friends…

I can’t say that this update is easy to write, it’s not, or that I have any special insight, I don’t, in fact I’m struggling to write this, but I want to let all of you who pray and support us with your thoughts and many kind words what is happening.

Lisa is getting weaker she is no longer getting out of bed, and has for the most part stopped eating solid food, the lone exception was that I got her up on Wednesday and she sat in her chair for a while, and ate a Christmas cookie that mom and the girls baked.  She has been drinking only thickened liquids and not a large quantity.  She has been responding to us when we talk to her, although she is not always talking, but she will usually nod or sometimes attempt to speak, but with less frequency and clarity.  As this last week has progressed she has been doing less of that as well.  Thankfully she has had very little pain and she has not been highly medicated, although she has been restless and we do treat that from time to time.  She has been and is declining and we are all aware that she will soon be absent in body but present with Christ.

I am doing OK, I guess, not having anything to measure this against, but God’s grace is enough.  Even though I have “known” this time was likely to come, now that it’s here I find that “knowing” and living something are not the same thing.  My parents, especially my mom, have been a rock for me, and God have given me good friends and co-workers, and my employer has been very understanding so I am just walking one day at a time.

The girls are also doing OK, they understand as well as can be expected.  We have been able to talk and discuss what is happening, but it’s still very hard for them to comprehend.  I am doing my best to explain to them that for Mom it’s a good thing, and we should be happy for her, but it will hurt us.

Some prayer requests would be for the girls, for wisdom for me and the ability to talk to the girls as needed.  Strength as we care for her, and freedom from pain for Lisa.  We also pray for the Lord’s timing, and for joy in this season amidst our pain.

God Bless

Jon

Liz and Kate trying out Mom's lift

Liz and Kate trying out Mom’s lift

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Update 12/9/2012

December 9, 2012

Lisa Update-12/9/12

It’s been a long time since I last posted on this blog, but  I feel like so many of you are praying and  would like updates, so I’ll try to start posting updates as I can.

OK. Quick summary of what has been going on.   I’ll start with Lisa’s overall condition in the last few weeks in since we came home from the hospital.  After the hospital visit and the conformation of the continued growth of the brain tumor(s) we elected to receive care through hospice of Holland and she has been at home with supervision.  She was able to transfer from the wheelchair to the toilet to bed ect. with help and the aid of a disk that we could use to help her stand on and turn, and she was able to talk and eat with us, as well as watch TV and function reasonably well.  Since that time she has slowly been in decline and is not at a point where we have to use a lift to move her from bed to her chair when she is willing to get up, she is struggling to eat and drink and is less able and willing to talk to anyone. She has a catheter and is seldom out of bed in the last few days. .  She has had a couple of mild seizures, and we expect that she could have more, so we are prepared for that as well.  This is quite obviously a decline in her health, and not totally unexpected but unpleasant none the less.

Right now she is being cared for at home with the help from my mom and dad, and hospice, who has an aid come in 3 times per week to bathe and help with her personal care.  As well as a nurse and a Dr. who visit as need.  Hospice has also provided a plethora of equipment that we are using for her care.  We have had to move me out of the bedroom to make room for her hospital bed and lift, but Thank God for the move as we would never had the room to care for her in the old house.

I am still trying to work when I can, both for the income and for the much needed break from round the clock care.  The girls are doing OK, it’s a very difficult time for them (for us all actually) but they are trusting God as well, and doing their best to make Mom happy and comfortable.  We are trying to set up for Christmas and plan to have the family over here so that Lisa can be included as much as possible and the girls are filling her room with pictures and decorations.

Please continue to pray for us, and I will try to update the blog as often as possible to keep you all informed.

God bless, Jonathan


Seasons Pass God’s grace remains

November 5, 2009

Wow, it’s been a while since I have updated the blog.  Sorry, I lose track of the time that passes.

It’s fall already?  Where did summer go?  It seems like it was July just a couple of days ago.  The scary part is that fall is almost over as well, most of the leaves have fallen off the trees, and some of them are raked up, (more will be this afternoon I hope, as it is a sunny day out right now) and the weather forecast had that four letter ‘S’ word in it.  I do like the snow, but I’m not ready for it yet.  Life goes on even if we are not ready for it, and the seasons change.

 

Psalms 104

v19 The moon marks off the seasons,

and the sun knows when to go down.

 

We have had a busy summer and fall, not always an easy one, but God has taken care of us in ways that we would not have imagined if it were not for the circumstances that we find ourselves in.  God has given us blessings uncounted, and He continues to do so, the strange thing is that sometimes it takes an unwanted change to allow Him to show us those blessings.  I (Jon) am still unemployed, although I have had a chance to work for a couple of days doing some machine repair and trouble shooting for a small business that was a supplier for my former employer.  I have also become at least somewhat skilled as a ‘househubby’, doing the cooking cleaning and house work.  The time off work has been good in some ways, lots of things around home need attention, and so I have had some chance to do that, and I think the girls have enjoyed having me around.  I walk Elizabeth to school in the mornings, and I think she looks forward to that.  Lisa, Katie, and I were also able to go to school and watch the costume parade on the 30th.  Elizabeth played soccer this fall, and had to suffer with Dad as a coach, but we had fun and had an awesome team this year, the girls were a pleasure to coach and we went undefeated.  With Lisa struggling a bit it has been good for me to be home with Katie, and that allows her to stay home and not have to go to a sitter, although she might prefer to go to Grammy’s house.  She is learning her numbers and letters and has boundless energy, way more that we (Lisa and I) have.  She as also so proud that she can do puzzles without help.  She loves to paint and create things, and is usually a happy little kid.  We had a party for her fourth birthday in October, and she is all ready looking forward to Christmas.  I enjoy the chance to spend some time with her, and I’m so happy she finally got the potty training down.  I think Lisa has also enjoyed having me around, although that has not been without a little conflict, I don’t do things the same way she does and it sometimes irritates her.  As she is more able to do things around the house it has become more of a challenge.  We are relearning our roles with the changes in our situation and looks like that will continue for a while.  Is far as a job, I had an interview last week for a contract position doing basically what I was doing before, with the possibility to be hired in at some point.  I’m waiting to hear back from that interview, I felt that it went quite well.  I’m a little uncertain as to how we will deal with me going back to work, it will be a challenge as Lisa is not back to 100% and I don’t know how we will manage that yet, but God can do it.  One day at a time, that’s how.

The house is looking nice with a fresh coat of paint and God blessed us with so many kind people who helped scrape and paint it this summer, and we have had so many meals and gifts that we are just in awe of God’s provision.  At this point we are ok financially, living carefully and we are able to carry COBRA insurance, so the medical stuff is mostly taken care of.

On to the medical stuff so I can get some leaves raked.  Lisa’s mental abilities are improving, slowly, and she is able to do more things that she used to do with ease, although the short term memory is still a problem.  She gets fatigued quite easily and naps often, but usually gets up and tries to do something between naps.  She has done a little cooking, although that is a big effort for her, it’s hard to follow a recipe if you can’t remember if you have added an ingredient or not.  The doctor that did the radio surgery is pleased with the results, the last MRI showed no new tumors and the ones that were there shrinking or gone.  We will have to have an MRI about every 4 months to keep an eye on the brain, but that is very good news.  The oncologist has also put her on an oral chemotherapy combination.  They are Tykerb and Xeloda if you are into research and want to look them up.  They are not as harsh as the infused chemotherapy, but still make her sick.  They are the most likely to be able to cross the blood brain barrier and have a positive impact on the brain as well as being effective on the cancer in the bones.  She has also has some problems with blood clots in her leg, and has had to take some blood thinners.  Lisa’s strength is slowly returning since she has been off the steroids, and she is able to get around better.  Balance is still a challenge, and she would have a very hard time passing a roadside sobriety test, but over all is able to be a little more independent.

 

Prayer and Praise

  • Lisa’s health (physical and mental)
  • Jon’s job search, especially for the right position with lots of flexibility.
  • Family, for patience with each other and the ability to adjust to the changing roles as Mom and Dad try to work through the lifestyle changes and to allow Mom to be involved as much as possible without placing to much on her.
  • God’s provision for our needs, and the ability to separate our needs from wants.

 

 

 

Blue Sharks Soccer 2009
Elizabeth’s soccer team

God’s overwhelming Grace

August 25, 2009

“May you always be overwhelmed by the grace of God rather than by the cares of life.”

This is a quote that was on the profile of a new ‘friend’ from Facebook the other morning, and out of that random event I learned another installment in the lesson that God is teaching us. It has been a couple of interesting months since my last post, and what an overwhelming time it could have been (and could still be, I guess).

First, Lisa is doing OK, she is gaining a little bit each day as far a clear thinking and the ability to remember things.  She has also been able to take more of an interest in the girls and having them around, as well as doing some things around the house on a limited scale.  The Doctors seem to think that she is doing well considering the circumstances, and are pleased with the progress of the radiation.  She has also started a new chemotherapy, and combination of two drugs that target the HER2+ cancer.  This as an oral med, so she does not have to go in to the infusion center, but it’s 13 pills per day in addition to the regular pills….  So far the side effects have not been bad, and they are not supposed to be as bad as the initial chemo.  We have to go for an MRI in a month or so to look at the brain, so will know more then.  She has gotten quite weak in the legs and has some trouble moving around and walking for any distance, so we have done a little changing around in our house to make it more accessible, and we have a wheel chair for outings.  We are slowly getting her off the steroids, but the road back to strength is a long one.  She is generally in good spirits, and enjoys cards and letters, but talking on the phone still is a little overwhelming for her.   She has been able to read a little and attempt some counted cross stitch, and is using the knifty knitter to make some simple projects.

The girls have enjoyed spending lots of time with Grandparents, Aunts (and Uncles) and friends, including trips to the lake and camping (Lizzy).  They have also gotten to spend some time with Lisa in the last couple of weeks as she has asked for them to be home, one at a time.  Katie is almost potty trained, if we could just get past the one last hurdle.

As for me (jon) “Change” has caught up with me, with the closing of the shop that I worked at I’m now one of the wonderful nation leading unemployment statistics.  It’s not all bad though, because our house needed scraping and painting and I just did not have the time to get it done.   We have our church helping us with the scraping and painting now, and it’s going along quite well!  If we get it done by Labor Day our wonderful city will drop the charges that they filed against us.  I have just begun the job search, and filed for unemployment, so we will wait to see what God provides. I can carry our health insurance for a while thru COBRA, and so that is a huge blessing.  I also have a couple of part time opportunities that may pan out, but first the house…

Prayer requests
• Lisa-continued healing and strength recovery.
• Lisa-good results from the new drugs.
• Elizabeth-back to school and that she is not growing up to fast.
• Katie-potty training and that she builds good lasting memories with Mom.
• Jon-strength, grace, wisdom, patience.
• Job, close to home, little travel, good flexibility, good insurance.

Thanks and God bless you with overwhelming blessings!


Update 7/19/09

July 20, 2009

5 Your love, O LORD, reaches to the heavens,
your faithfulness to the skies.
6 Your righteousness is like the mighty mountains,
your justice like the great deep.
O LORD, you preserve both man and beast.
7 How priceless is your unfailing love!
Both high and low among men
find refuge in the shadow of your wings.
8 They feast on the abundance of your house;
you give them drink from your river of delights.
9 For with you is the fountain of life;
in your light we see light.
10 Continue your love to those who know you,
your righteousness to the upright in heart.
Psalm 36: 5-10 (NIV)

We are blessed to be loved, by both our heavenly father and by so many of you. We can not express how much the blessings that the Lord has given us through all of you have meant to us. Thank you all.

Well as I have not given an update it a week or so here goes…
Lisa had the ‘radiosurgery’(also called Gamma Knife or Cyber Knife) last week Friday, for three tumors in the brain. It took about 50 minutes from the time they took her into the radiation chamber until they unstrapped her, and we were out the door on the way home 10 minutes after that. She actually felt fine after it was done, although I was worried the she would be sick on the ride home, she was not, and we even stopped for McDonald’s on the way home (her request). Since that time her symptoms have gotten slightly worse at first, and are a little less no than before the treatment. The sleepiness comes and goes, and the confusion and forgetfulness are still better and worse with no predicable schedule. Over all I would say that she is better today than one week ago, so that is a praise. She did go to church today, a worship team from Cedarville U. was there, so I asked her if she wanted to go, and she said yes. We snuck in the back a little late, and hurried out at the end so she would not have to talk to many people, as that was one of her fears, but it went well! We also celebrated or 16th wedding anniversary on the 17th by ordering Chinese takeout, again at Lisa’s request. She is still on the steroids, although I was able to slightly reduce the dose that she is taking. This is good as the steroids are causing more and more weakness in her legs and other long muscle groups and making it hard for her to stand up from a sitting position or go up and down steps. She is really trying to use it not lose it, and stay active, so we won’t give up! We expect to talk to the medical oncologist this week and get started on some oral chemo soon to help with the bone cancer. We don’t yet know what the side effects will be like from that, so will have to wait and see. We also do not know the results of the radiation treatment; I would expect that they would take another MRI in a few weeks to see the results. So medically speaking, wait and see. Emotionally this has also been hard for us, Lisa feels like our lives are on hold and that we can not make any plans until we have more information about the medical, and that is an area of stress for her, and in many ways she is right. It’s hard to watch life go on around you, and have hopes and dreams, but not know if you will be here in 6 months, or if you are, will you feel good enough to do what you had planned. So Pray with us the we would make wise use of the time that we have, 6 months or 60 years, only God knows.

For prayer;
• Lisa, healing and strength
• Jon, strength and trust in God
• Liz and Kate, calm in unsettled times, and good memories with Mom
• For all who are helping out, many blessings in return.

May God bless you,
JB


Quick Update…7/7/09

July 7, 2009

We are getting ready to go to Grand Rapids for Lisa’s mask fitting and for a CT scan with the mask on. This is to give the radiologist an accurate and repeatable ‘map’ of the tumors and a way to keep Lisa from moving on the table during treatment. We had an MRI yesterday, have not heard anything about the results. I guess we will find out today… Lisa is doing OK, the long term steroid use is have an effect, her legs are getting weaker and we use a wheel chair for most of our trips out now. We are able to get out for a little at times, and that is a good thing. I’ll try to do a better post sometime, Thanks for the prayers!


Latest News

June 30, 2009

Well the insurance co. finally approved the treatment, at 4:30 Friday afternoon, so we have the appointments scheduled for next Monday and Tuesday, and then treatment Thur or Friday. Not as soon as we wanted, but hopefully it is progress. I’ll try to do a more detailed update soon, till then God bless