Trish and Neal's Health Update

Radiation has started!

2012-02-10T17:52:00.002-05:00

Neal started radiation yesterday. The first time was about 1 1/2 hour long because they have to take some pictures and line him up correctly. Last week he had a mold made that he lays in to keep still and they line him up at certain angles to target the tumor directly. Today and the other 23 treatments should only be 30 minutes long. His appointments are at 9:30am so he will drop me off at the office, drive in to Chicago and pick me up when he gets back into town. As long as Neal isn't too tired he will drive himself in for his treatments.

Karsten's 20th birthday was yesterday so Neal and I are going to Taylor tomorrow for the day. We will go out for late lunch/early dinner to celebrate. Grant, Jenni and the boys will be able to join us. Neal's numbers have been on the rise so he should be okay at the resturant since it shouldn't be a busy time of day. This will be his first outing in a public place (except for hospitals and doctor's offices) in several weeks!

Karl's surgery was moved up to February 24 so they don't have to wait so long. He went today to make sure he is healthy for surgery and get blood work done.

I took Dale and Bobbie to Dale' doctor's appointment with the nuerologist this morning. He will have a few more tests done to see if they can get some more answers.

I am re-reading a little book by Anne Graham Lotz called "Why?" It is a great easy read talking about why does God allow bad things to happen to "good" people. One thing she says is that God allows storms of suffering to increase and intensify my life because He wants me to soar higher in my relationship with Him--to fall deeper in love with Him, to grow stronger in my faith with Him, to be more consistent in my walk with Him, to bear more fruit in my service to Him, to draw closer to His heart, to keep my focus on His face, to live for His glory alone. So when we ask "Why me?", God whispers, why not you? Just trust Me!

On the journey,
Trish

Home!!

2012-02-04T07:40:00.003-05:00

Neal's numbers were on the upward swing so he lobbied yesterday to come home and doctors agreed! A group of my friends were at our house helping to clean to get ready for Neal to come home today when Neal called. So the timing was great! I left after lunch and we were home by 3. Friends are such a blessing.

Whitney and Ty came Thursday night because Whit had oral surgery yesterday. (Thank you Ryan). Britton, Michelle and Eli are coming today to hang out so it is great that Neal is home to visit. He is feeling quite well and is very talkative!

Neal's brother, Karl, had a doctor's appointment at Northwestern University on Thursday. His tumor on the brain is growing back which was probably the cause of his fall. He had surgery fall of 2010 to have his first one removed which was benign. We are praying that is the case this time. He is scheduled for surgery at NW on March 9.

It has been an eventful 9 days. Of course it is natural to ask "Why God" or "Are you kidding me?" But we have chosen to trust that God is in control and He uses all things for his purposes and plan. He is the one that provides peace, strength and comfort which many times we only experience at a deeper level when we go through difficult times. God has been faithful in the past and will continue to do so today and in the future. Thank you God for making me need You.

On the journey,
Trish

Still at the hospital...

2012-02-02T18:02:00.002-05:00

Neal's ANC number keeps doubling. It's up to 400 today so doctors are hoping that by Saturday he can come home. He met with the radiation oncologist yesterday and they have decided to radiate the tumor. Today he was measured and marked up to begin radiation next Thursday. The kicker is that Neal will have to go to U of C M-F for 5 weeks! That's a lot of miles on our car!
Neal is feeling good and is in good spirits.

On the journey,
Trish

Update

2012-01-31T17:35:00.003-05:00

Neal got to the Univeristy of Chicago last night around 6pm. I stayed with him for a few hours and then came on home. I need to do some things at the office. His fever is down today. He received a blood transfusion and some fluids so he is feeling much better. His white count is very low still and the ANC is at zero but should be 1,000. The ANC are the fighters of the white cell. So U of C is keeping him for a few days to keep an eye on him.

Karl should be discharged from the hospital tonight and has a doctor's appointment at Northwestern Thursday to get some answers.

Pray for healing for the Smith brother's.

On the journey,
Trish

Double Emergency....

2012-01-30T22:57:00.002-05:00

Neal's temperature continued to go up and down all weekend. Early this morning it was 101.9 so Neal called the University of Chicago. They told him to go to our local emergency room to test for an infection and get on antibiotics right away. So far there is no infection but his white count is still really low and his hemoglobin is low. The U of C decided they wanted him transported there to give him a blood transfusion and do more tests. We had to wait for a room assignment at U of C before Lakeland would release Neal, which happened late this afternoon. Neal arrived about an hour after I got to U of C at 6pm. He'll probably be there for a couple days until they get all the tests back. His temp was down when I left him tonight.

While we were at our local emergency room this morning I thought I recognized a voice. Sure enough Neal's brother Karl came in by ambulance. After he was on his treadmill he blacked out, fell and hit his head. We couldn't believe it when Karl's wife came into our room! Come to find out we had the same nurse and doctor. The nurse was curious if the guys were related but of course she couldn't ask so she was glad when Jamie came into Neal's room to get her answer! Karl has been admitted to our hospital to run some tests to see what is going on with him.

Dale is doing better. His tests didn't show any cause for his seizure so he doesn't have to go on anti-seizure meds. He has a follow-up appointmet this week.

I'm sure our family was the talk of the emergency room! It sure feels like Satan is attacking us. The Holy Spirit is stonger in us than he who is the world.

On the journey,
Trish

Wild few days!

2012-01-28T21:14:00.003-05:00

Thursday Neal and I went to the University of Chicago so Neal could receive retuxin and vancrystine. By the time he gets the pre-meds, the whole process takes about 5 hours. Dr Kline stopped by to check in on Neal and asked him to call him in about a week to see how the tumor is responding before we determine the next treatment. In the meantime he will go to the local oncologist on Monday and Thursdays to have his bloodwork checked. Neal is lacking in energy and has not been feeling the greatest. He's been mostly laying on the couch.

Early Friday morning Neal's dad had a seizure in his sleep. When we got to the hospital he had a bunch of tests. The hospital kept him until today to finish up tests and get results which were all negative. The doctors and nurses were all amazed that this 88 year old man was on no medications! The down side is that Dale won't be able to drive for 6 months but he has lots of family and friends to help out.

Friday night about 10:30 Neal ran a fever of 101.4. Anything over 100.4 for him requires a visit to the hospital. I quickly got him some Tylenol, started packing his suitcase and put on a pot of coffee. After having 4 hours of sleep the night before I knew I needed some cafeine! No more than 15 minutes after the first reading his fever went down to 99. I think it was a miracle from God! So I got ready for bed and had a good night's sleep:) So far he hasn't spiked another fever. Praise God!

Karsten came home for his J-term break Friday morning. The month of Janurary he took a Biblical history class. For the last 13 days of the class they went to Turkey to visit some historical sights in the Bible. He had a great time and the Bible came alive.

I am hoping for a quiet day tomorrow!

On the journey,
Trish

Crazy Weather!

2012-01-23T19:26:00.003-05:00

Friday the kids here had a snow day and last night it was thundering and lightening! Go figure!

I brought Neal home from the hospital Saturday. He was feeling quite well. He couldn't go to church on Sunday but did go to small group Sunday night. He enjoyed the company! Today he went to the local oncologist to have bloodwork taken and receive a neulasta shot instead of giving himself neupogin shots. Neulasta shots last longer so we'll see how well it does to keep his white count up. Today it started to drop which may be the reason Neal has felt out of sorts all day.

Neal and I actually had a date today at the oncologist's office! If you remember, when I had breast cancer I participated in a clinical study for women that were Her2 positive (basically means my tumor was hormone fed). Instead of receiving the standard infusion of herceptin I took a pill called Tykerb everyday for a year. I received a phone call from my doctor at Northwestern University this past fall that the arm of study I was in closed because many women were having a reoccurance of breast cancer. The study wanted me to now get herceptin once a month for a year. The combination of the two drugs has had good results. I had a scan before I started and there was no cancer! This is my 2nd treament, 10 to go! It is administered through an IV in my arm and only takes about 45 minutes. This is a preventative drug which I am happy to take. So I got the best of both drugs!

Thursday we go to the University of Chicago to see the doctor and Neal will receive retuxin.

On the journey,
Trish

We all have cancer

2012-01-19T20:35:00.002-05:00

Feeling good! It has been a good stay this time. I am on some different meds this time and getting some good results.

Trish came to visit today for a few hours and it is always good to visit with the ones you love. That is the hardest thing about being ill is the separation from those you love.

I had an interesting discussion with my MD as she said "we all have cancer" but our immunity system destroys them most of the time. I took interest in that observation from a spiritual perspective as we all have sin - our spiritual cancer. It will eventually take over and affect our lives. What is the cure for our spiritual cancer? What does the Bible say? It is Jesus and forgiveness of our sins.

Thanks to all of you who support the members of our family. It takes on a different angle when you are on the receiving end, in the midst of the storm.

Blessings,
Neal

Treatment #3 coming

2012-01-15T21:14:00.005-05:00

We were able to go to Muncie today for Corbin's dedication. On Tuesday we weren't sure if Neal would get to go with us. The University of Chicago wants Neal to get bloodwork done locally twice a week in between his treatments. Tuesday his platelete and white blood count were both very low which required Neal to get a bag of plateletes. When he went Thursday to have his bloodwork done, his numbers were great! So we went to Indianapolis yesterday to visit Whitney and Ty and then on to Muncie today.

Visiting the kids this weekend and being invited to some friends house for dinner Friday night, Neal is feeling energized to ready for his next treatment.

The plan after this treatment is for Neal to get a scan to see how effective the chemo is on his tumor. Probably more treatments but everything depends on how the tumor responds to the treatment. So basically this is all in God's hands. He is the one in control! :)

On the journey,
Trish

Progress!

2012-01-06T20:26:00.002-05:00

Happy New Year brings some good news. I had a check up yesterday and the abdominal tumor has shrunk well. If things continue to progress I will have one or two more treatments and then a PET scan to see if there is any activity. If all is in remission, we move forward with a bone marrow transplant again.

This session went so much better! I am feeling quite well even without hair. Shaving has gotten easier :). It is like looking forward to the flu realizing the journey will not be easy but the end result should be good. Last session had really battered me around.

It is so easy to understand how your health situation affects your attitude.
Wednesday I was in the local reception area with about a dozen very somber, tired folks, almost all over age 70. They were weary I could see. So how do we get their attention and break up their funk? Announce "When does the karaoke start?".They all gave me a quizzical look and one lady said 7:30. See, when you have any illness, humor is needed. We are just sick, not humorless. Think about your part on how to make someone smile and laugh. Of course, some of you are more reserved than I am, but do your part.

Thank you to all of you who are praying for us - and making us laugh and smile.

Blessings,
Neal

Happy 2012--Neal is home!

2012-01-02T12:48:00.002-05:00

Neal was discharge early and came home Saturday afternoon. His white count and platelete counts are pretty good. His hemoglobin was slightly low so he had some blood transfusions before he came home. He has been feeling very tired and has no reserves. Tomorrow he goes to the our local oncologist to have his blood checked and get retuxin. Thursday we go back to U of C to see the doctor.

We don't know what 2012 will hold for our family, none of us do. I do know that God is in control. He has plans for us; plans to prosper us and not harm us, plans to give us hope and a future.

On the journey,
Trish

Year's end update from U of C

2011-12-30T18:14:00.002-05:00

Happy New Year to all,
This visit has gone very well for which I am thankful. The treatment is the same but my numbers have been very good. I feel well, just need a couple of naps more often. Lots of football on this week which helps pass the time. I am able to read and check e mails and watch a little TV for 30-60 minute and then that gets boring. My excitement for the day was having some equipment issues at the office that I had to coordinate with Trish from long distance. Problem solving is good, and I was pleased to feel well enough to do it.

I was able to get an extra week at home due to last round's complications so it was very rejuvenating to be home and have the family home. I can understand how people can get battered around with illness and it does take some of your "fight" away from you as you enter the next round, especially if you don't know if it will be the same as what was just experienced or will go smoothly like this time. Having it go smoothly this time helps gear up for next round.

I read a great devotional today on John 14:12 on our unlimited potential we have with the Holy Spirit living in us and the promise Jesus gave us. I recommend you read it a couple of times - the entire chapter.
Andrew Murray writes "Your Christian life is to be a continuous proof that God works impossibilities."

I am thankful that I feel well and the treatments are reducing the size of the tumor. The doctors evaluate after each treatment to determine which direction to head. I look to be out Saturday or Sunday with a couple of local visits for treatment.

Trish came to visit today. It is great to have her sitting by me and visiting - although the phone works it is different when she is by my side. Whose side are you by? Text messages, phone calls, cards and letters are important yet being there in person lifts the spirits in a different way. It does take more time, and more effort, but it doesn't have to be a long visit. I encourage you to make a visit to someone who would benefit from see your face, and getting a handshake or hug. Maybe even a tasty treat.

Blessings,
Neal

Treatment #2

2011-12-28T08:45:00.004-05:00

I took Neal to the University of Chicago yesterday to begin his 2nd treatment. I stayed to help get him settled in and then returned home. Some of our kids were still here from Christmas. Neal didn't start his retuxin until 6:30pm last night followed by his methotrexate. The earliest he will finish with his chemo is Friday. Hopefully he can come home shortly after that. His white count was good going into chemo so we'll see what happens with that.

We had a fantastic Christmas! Grant, Jenni, Lane and Corbin came Friday morning. Karsten was already home for break from Taylor. The rest of the kids, my parents up from Florida and my sister came Christmas Eve night. Earlier in the day some of the Smith's came to our house for Christmas Eve dinner. We woke up Christmas morning to Lane saying, "Oooo, ho, ho, ho" after he saw that Santa had come during the night! The joy of having little ones in the house again! Instead of the siblings exchanging gifts this year Britton devised 3 gift card games for us to play. One was based on a chldhood game the kids had made up when they were littlier and the other 2 were your standard matching and stealing games. We played those inbetween opeing gifts. It was a very fun morning.

The last several years we have been doing fondue on Christmas Day. By the time you do the cheese, followed by meats and end up with the chocolate fondues, it's an all afternoon affair. But very yummy! Grant, Jenni and their boys headed for home and Britton, Michelle and Eli headed over to Wheaton early evening. My parents and sister left Tuesday morning. Whitney and Ty left last night. Karsten doesn't go back to school until Monday.

When I got back from taking Neal yesterday, the kids had cleaned the house! It was very sweet and very appreciated:) It's been full several days but wonderful being together as family, laughing, eating, playing games and celebrating the birth of our Saviour.

I am so thankful that Christ is the King of Kings and Lord of Lords; my Shepherd, Companion, and Friend--the One who never lets go of my hand. He gives me everything I need.

Resting in God's peace,
Trish

Neal is home!

2011-12-16T15:21:00.002-05:00

I brought Neal home last night! He had been without a fever for over 24 hours and his white count was up to .7. He persuaded the doctor to let him go last night after his blood transfusion so he could be at the office today to meet with the staff and consultant that has been there all week. Neal is so thrilled to be out of the hospital and is feeling good. He needs to go this afternoon to the local doctor to get his blood drawn and will do the same a couple times next week. He is scheduled to begin his next treatment on Dec 27. This way Neal will be good for Christmas. God's timing is good.

Thanks for your prayers,
Trish

2011-12-14T11:11:00.002-05:00

Neal is still at the University of Chicago hospital. I was feeling better yesterday so I went in to the office for staff meetings because we have a consultant in this week. After work I went to see Neal and take him some clean clothes, laptop and reading material. Earlier in the day his fever was gone but his white count was still .1. Just as I was getting there his fever went up again. I wore a mask because I was afraid of spreading germs. They think this is a reaction to the platelets and not me(he was given another bag yesterday). This morning his fever is back down and his white count is at .4! It is finally moving back up!! Please pray it will continue to do so so he can come home.

On the journey,
Trish

I'm home again and Neal isn't

2011-12-12T19:48:00.002-05:00

Sunday I took Neal to the University of Chicago for his bloodwork. His white count was still .1 and his plateletes were even lower so he got a bag of plateletes. We arrived home mid afternoon. Later in the afternoon Neal started having chills and later in the evening he had a fever of 100.8. Anything over 100.3 he is to go to the emergency room because an infection could spread rapidly due to his low immune system. We went to our local hospital's ER around 10:30. After his blood work-up His temp was 100.0 so the doctor was going to let us go home. While the ER doctor was on te phone with the doctor in Chicago, Neal's temp went up to 102.3 so the decision was made to transport him to the Univeristy of Chicago after they pumped him with antibiotic. By the time he left at 2:30 his temp was down to 100.4. I decided to go home to get a few hours sleep, take Collin to school in the morning and stop in at the office to update the staff. The plan was for me to go to U of C after I heard from Neal what his status was.

I had a bad headache when I woke up but thought it was due to lack of sleep. When I got home from the office I layed down and started to throw up shortly after. I have been battling the flu all day. It's a blessing that I am here and Neal isn't. I was concerned that I had caused his fever but the doctors don't think so.

Neal's temp went back up this afternoon so they were going to give him a full blood transfusion. He will probably stay at U of C for a couple days. I will wait to see how I feel in the morning to determine if I head over to Chicago.

Please pray for healing for both of us. I feel weak physically and emotionally. I am reminded of the scripture, "When I am weak, HE is strong."

Leaning on God,
Trish

Update on Neal

2011-12-08T21:00:00.002-05:00

I brought Neal home Tuesday afternoon although his methotrexate levels were still high. The doctors and nurses finally decided that the machine was broken because his numbers were bouncing up and down. His white count was .1 (should be at least 4.5) which means he hasn't gone anywhere. We've cleaned the house and disenfected things. A good excuse to get Collin to clean his room! Neal has been feeling pretty good just tired. He's getting his appetite back.

Neal had to go back today to have a echocardiogram, see the doctor,and get his blood checked. His white count was still .1 and his plateletes were too low. We went back over to infusion so Neal could get a bag of plateletes.

The doctor wants Neal to come back Sunday to have his blood checked again. If his numbers are too low it will postpone his next treatment which should be around Dec 18. These are all normal side effects.

Please pray that Neal's number would be on the rise so he can receive his next treatment on schedule.

On the journey,
Trish

I'm home but Neal isn't....

2011-12-05T18:49:00.001-05:00

Yesterday Neal's methotrexate/leucovorin was still too high even though he didn't have a fever. The magic number to go home is lower than .05. Saturday that number went up instead of down but Sunday is went down but not enough. This afternoon his number was .11. He also needed retuxin again so they kept him to give him that as well since it takes 4 hours to administer. So, if his number is good tomorrow he can come home, I pray. :)

More to come....
Trish

One more day at this lovely hotel!

2011-12-04T10:53:00.002-05:00

The doctor just came in to see Neal and decided to keep him until tomorrow. His fever is gone but he has to be without one for 24 hours. His body is ridding the methotrexate too slowly although he is not far from the magic number to go home. Plus Neal's white blood count is low and they want to get him started on neupogin shots. Put that all together after receiving large doses of chemo wins him another night in the hospital. Neal just says, "It is what it is." He is feeling much better today.

I will have to go home this afternoon because I have a routine CT scan in the morning. After that I will come back to bring him home.

Just a reminder that God is in control. We can have our plans but it is God's plans and purposes that prevail.
Trish

Still here....

2011-12-03T18:45:00.002-05:00

We are still here at the University of Chicago. One of Neal's levels is still too high to go home. He also has a low grade fever. So, they are pumping him with some fluids and giving him an antiobiotic. He hasn't eaten much and is tired but no sickness.

Pray that he will be able to go home tomorrow. We are both getting antsy!

On the journey,
Trish

Doing well!

2011-12-02T18:14:00.002-05:00

Neal is doing well! His biggest complaint is a headache and being tired. We'll take that! It looks like we will go home tomorrow morning. Neal will receive his last chemo at 5AM Saturday. This is the chemo (cytarabine) that he receives every 12 hours. In between they give him leucovorin which flushes the chemo out so it does not damage his kidneys and liver.

I am getting most of my Christmas shopping done via the internet! What did we do before the internet??

On the journey,
Trish

2011-12-01T10:34:00.002-05:00

Neal continues to do well! The chemo they are giving him today (cytarabine) may cause him to feel sick but they have pre-loaded him with anti-nausea meds. Yesterday Neal had a lumbar puncture to administer the chemo (intrathecal) directly up to his brain because the methotrexate does not cross the brain barrier. Sounds worse than it was, he didn't feel a thing. We were able to walk the halls for about 45 minutes in the afternoon dragging his pole along.

Neal's room must be in a dead zone because we have a hard time getting internet so I have to come downstairs to work on the computer. Last night when I was downstairs I ran into a gal whose husband is also in the hospital. I met her a year ago when Neal was here receiving his chemo before his tranplant. They shared a room with us for a while. I have continued to "run into her" on numerous occasions through out the year when he have been here at the doctors or hospital. We commented last night that we feel like good friends even though we are strangers. Her husband had a transplant a month after Neal's and has also had a reoccurance of his cancer. Unfortunetley his cancer has spread. He is only 26 years old and they have a 1 1/2 year old son. We talked about peace and comfort that can only come from God. Please pray for Erica and Marty as they cope and pray for Marty's healing.

I better go back upstairs and check on Neal.

On the journey,
Trish

We are here at University of Chicago

2011-11-30T10:59:00.003-05:00

Neal and I arrived at the U of C yesterday at 12:15 for Neal's CT scan. We waited, he drank his stuff, waited some more and finally had the scan. We then went to the hospital admitting and waited for a room. We got up to our room around 4pm, got settled and then they did his bone marrow biopsy in the room. I stayed and watched--very interesting! He received his pre-meds and then started Retuxin and a steroid. About 4AM today Neal started methotrexate which will run for 24 hours. During the night he had a bad headache and trouble sleeping so he received something to relieve his pain and help him sleep. He's been in and out of sleep yet this morning. I am sleeping on a cot in his room which isn't too bad.

We did revceive some good news this morning that Neal's CT scan did not show cancer in any other part of his body other than his tumor. Praise God!

We are waiting for the doctor to come in to receive part of his treatment. More on that later.

I want to share what I read in a devotional this morning:
"Let me (God) infuse My peace into your innermost being. As you sit quietly in the Light of My Presence, you can sense Peace growing within you. This is not something that you can accomplish through self-discipline and willpower; it is opening yourself to receive My blessing. In this age of independence, people find it hard to acknowlege their neediness. However, I have taken you along a path that has highlighted your need for Me: placing you in situations where your strengths were irrelevant and your weaknesses were glaringly evident. Through the aridity of those desert marches, I have drawn you closer and closer to Myself. You have discovered flowers of Peace blossoming in the most desolate places. You have learned to thank Me for hard times and difficult journeys, trusting that through them I accomplish My best work. you have realized that neweding Me is the key to knowing Me intimately which is the gift above all gifts."

As a good friend reminds me often, "Thank you God for making me need You!"

On the journey,
Trish

Life Interruption vs. Divine Intervention

2011-11-25T10:23:00.002-05:00

I will be at U of C Tues afternoon and plan to be out Friday so they can monitor my liver and kidney function during chemotherapy. The average stay is 4 days every 3 weeks for 4 sessions to start. Could go up to 8 sessions. Maybe less depending on progress. Not the route I wanted to go but if you read the blog you will see that God has used us among the staff at U of C. That is really exciting when the physicians, one admitting she is not "religious", ask about our faith. We pray God uses us where he puts us - of course I must admit I would prefer a tropical paradise and not a hospital. I have a discussion with myself knowing I want to be where God puts me/us because that is the best vs. where I want to go which is far away from having cancer. Sounds like a Jonah challenge, doesn't it. Or Job, or Paul, Joseph and many in the Bible.

Trish just finished a study about Jonah that talks about Jonah where the speaker calls them not Life Interruption's but Divine Intervention. Priscilla Sheer was the teacher (video). After all what is our purpose in life? I believe it is the highest calling to be used by God to share his love to others and give them hope. The hospital is a great place for physical healing but a parched place for faith.

As I go in and have the lump in my "abs of steel" examined, the physicians ask me multiple questions under the heading "Do you feel ok?". When I tell them I feel fine they ask a few more questions. My take on the underlying premise is "you should be sicker". I tell them that I have people praying for me around the world - which by the way still overwhelms me. They don't know what to do with that necessarily - not yet - but they have to wrestle with the comment. As I ask people to pray for me I also ask them to pray for those who treat me that they would be challenged in their relationship to God and find hope through Jesus. There are different analogies that I can think of but one is that as a Christ follower I am like a faith marrow transplant, injected into the medical system to offer life and hope to those who don't know they are sick from the curse of sin. Only Jesus can cure what ails you. Maybe my being there helps them to realize their illness and the need for "the Cure".

Again, I tend to be like Jonah in the Bible, and may think "Why does it have to be me? Isn't there someone else who can do this instead of me" as I am really thinking "I want to avoid this". Of course I know God knows what I am really thinking. We all realize in this situation it isn't me thinking about how I can advise God and help Him find a better option, that "Really God, there is someone else better equipped to do this" (think Moses). It is me thinking "How can I avoid this?" Just being honest. Yet I must embrace and trust where God has led me and make the most of the opportunity each day, appreciating that God chose me to be his instrument, as He must think that I am uniquely equipped and positioned. The argument on each side ebbs and flows. The human will vs. the divine purpose.

As a Christ follower, we are each uniquely equipped and positioned by the power of the Holy Spirit. Each day I believe God determines our path and each interaction with people is a divine appointment. Again, I often forget this in the day to day of life and that each of us admit the same flaw. That is also why I am glad God covers our weakness and mess ups. Thanks to you for your kind support and encouragement of my family. We are only promised today - and even then not all of it - and greater yet is that we are promised eternity with God. What other hope is there?

Trusting God,
Neal

A new opportunity

2011-11-22T22:00:00.002-05:00

Here we go again. The Revlamid didn't work as hoped so we are on to a different drug series that will require me being hospitalized for 4 days to track my liver and kidney function. I get to do it every 3 weeks for 4 sessions and then maybe 4 more.
I don't look forward to having the flu like symptoms for a few days but the good news is I know what to expect to a great degree. And I get a whole new set of nurses to tell my jokes to. And this time after I lose my hair it may come in red?

We were thrilled when one of our MDs, a fellowship intern female about age 30 told us what the likely plan of action was. Then she followed up with "I know that people who are religious do much better with treatment. I am not religious but I know you are. Do you feel like you don't have control of things?" (implying that God controls everything and we have no say). I told her that God gives me a peace that passes all understanding. Plus I noted that all of us will die (although I prefer later to sooner). Trish noted that we (Trish and I) know where we will end up - with God. I do not believe we are puppets but God uses everything for good to those who love Christ Jesus.

This conversation is actually a continuation of one I had with her during my 40 minute bone marrow biopsy several months ago. Dr. M asked at that time how I was doing adjusting psychologically to having the bone marrow transplant and I also referred to the peace that God has given me. Interestingly she asked to follow me and my treatment if I could come on Mondays. It didn't matter to me so I honored her request.

Some of you reading this may think "Does God care? Where is He?" I can tell you yes he loves you and cares about each thing that happens. I can't explain the peace he gives us even though I occasionally have anxious thoughts - that is part of being human. What other hope do we have? He is always by you, you just need to ask God to show himself to you. Everyone must come to a point that they realize they are not in control of their life and need Jesus.

Be stretched,
Neal

Doctor's report

2011-11-14T20:45:00.002-05:00

Last week Neal saw his doctor while he received his treatment. His tumor is not bigger but it's not shrinking either. The doctor thought it would have started to shrink so Neal is on another round of Revlimid. He will see the doctor next Monday for a check. December 5 Neal will have a treatment, see the doctor and get a scan sometime around then. He is feeling good except tires easily.

Please pray that his tumor would respond to the treatment.

On the journey,
Trish

Corbin William Smith!!

2011-11-01T13:35:00.002-04:00

We were blessed with another grandson last night at 6:02 pm. Corbin William Smith was born during Trick or Treating to Grant, Jenni and Lane weighing in at 8'13 oz and 22 1/2 inches long. Jenni was induced 7 days early and still Corbin was a good size! They are doing great. I am here in Muncie staying with Lane while they have been in the hospital. This morning I took Lane over to meet his new brother. He wasn't quite sure what to do at first but he warmed up after awhile. I think Corbin looks a lot like Lane did at birth, both having looong lashes.

Lane and I went trick or treating last night! Of course I have confiscated the candy I like, yummy reeses cups, Butterfingers, Snickers. They are ones he probably shouldn't have!:)

The plan is for Mommy, Daddy and Corbin to come home tomorrow night. Life will be different at this house!

Blessed,
Trish

2011-10-28T21:35:00.004-04:00

Neal and I had a great time away last week. We had good weather, experienced God's creation through the mountains and color changes of the trees, read a lot, slept in and hiked. We visited the world's largest tree house which we thought was going to be lame but was very impressive. The guy that built it did it with donated materials and no power tools.

We ended the week at a dental seminar in Savannah, GA. Neal is pretty jazzed about a new procudre he learned.

I leave again Sunday to go to Grant and Jenni's house and stay with Lane while they go to the hospital for the birth of their 2nd son. It looks like he will be a Halloween baby! I will stay for a few days to help. I am very excited to be a part of this special time. Of course I will post some pictures next week!

Neal's treatment went well this week. His next one is November 14 and then once a month.

Until next time,
Trish

A Little Vacation!

2011-10-15T17:55:00.004-04:00

Neal and I are down at Fairfield Glade, TN for a little vacation. We had to go somewhere where we could drive since he can't fly until next spring. The colors are beautiful here and the weather is a little warmer than home. At the moment Neal is writing a chapter of our book that many have encouraged us to write! I brought some material to read for a class I will be teaching this spring at Taylor Univeristy about children and family ministry. There are lots of places to hike around here so we will be putting on our walking shoes as well.
Collin is holding down the fort in Bridgman with Grammy and Grandad.

Neal got permission to miss his treatment this week, so he will have two more weeks in a row than start once every 4 weeks. He is still feeling fine and his numbers are good.

At the end of this week we will meet two of our staff in Savannah, Georgia for a dental seminar. I think this will be good for Neal to stimulate his mind about dentistry instead of cancer.

On the journey,
Trish

2nd treatment

2011-10-05T21:32:00.004-04:00

Sorry it took me a while to post about Monday's treatment. We are watching our grandson, Eli, for a week while his parents enjoy some time away. We are having fun. Sometimes I take a double take, Eli looks so much like his dad at that age. One of his favorite things to do is open and shut the cupboard doors. He has also discovered at dinner that he can see his reflection in the sliding door. He talks to himself and laughs while watching himself. The funny thing is that his dad used to do the same thing!!

Eli and I dropped Neal off at U of C hospital for his 2nd treatment and continued on to IKEA and lunch with my sister. Neal didn't have any problems this week-- it just took a while. He slept on and off. Since we have spent so much time at the U of C, he had quite a few visitors stop by to say hello! One was the doctor from the study Neal was originally part of and her assistants. They were surprised to see him in the infusion room becasue they didn't realize he had a relapse with his lymphoma.

Neal is still doing well with working at the office part-time.

On the journey,
Trish

1st treatment again down!

2011-09-27T20:58:00.002-04:00

Yesterday went well at the University of Chicago. We arrrived at 9:30 Chicago time and got home at 7PM. It was a long day! The infusion room at the univeristy is a very busy place--not very restful. Neal received retuxin starting at about 11AM after receiving some benadryl and tylenol. Part-way through Neal broke out with chills, a reaction to the retuxin. The nurse stopped the retuxin and gave him some drugs to stop the reaction. After waiting awhile they resumed the retuxin with no more problems. The benadryl made Neal sleep a few of the hours. Today he was good as new and able to work!

Thanks for your prayers as we continue down this journey.
Trish

On the road again

2011-09-25T22:30:00.000-04:00

In Acts 8, Philip was put on the road by God to show the Ethiopian eunuch - a very high government official - who God was. I consider this is where I am on this journey. In July, I noticed what was thought to be a hematoma (see previous posts). After biopsy it is determined that it is lymphoma - again/still. The bone marrow transplant didn't work as hoped. It is disappointing but good that it appears it is only in my abdomen muscle. They don't know why it is there except it is happy there as my other one was deeper below it.After the news, we must admit we were disappointed but not as blow away as the first time. Much of that is because we know more of what to expect plus I know that I can still trust God.I now have Dr. Smith whom I first saw in May of 2010 but was then referred to Dr. van Besien for my transplant. Well, I am back with Dr. Smith because Dr. van Besien moved to Cornell in Manhatten. What now? Well, there are several treatments available. The first is for me to have biological chemo for a better term. It interferes with the lymphoma cells and is well tolerated so I can still work - (Trish says hurray! so do I). The risk is a lowered white blood cell count but I have had lowered counts anyway as they work their way up over time. What is in store for us? We don't know except that God has a plan and put people in front of us on the road to tell them who God is. Thanks for your prayers and concern for our family as we all process it. You are welcome to ask us questions.God is still good!Neal

1st Day Back to Work!

2011-09-12T09:18:00.002-04:00

Today is Neal's official 1st day back to work! I told him we needed to get a picture just like I do for the kids 1st day of school. He gratefully obliged.:)
He will start back very part-time working Monday and Tuesday mornings, Wednesday and Thursday afternoons. We are so grateful for Dr. Thomas stepping up and holding things together at the office. He and the staff have been very flexible and supportive during these past 10 months. That's a long time to have the schedule turned upside down but they have been awesome!

Neal has been feeling pretty well. His white counts have been struggling to go up so he has been giving himself Nuepogen shots to boost them. Last week his counts were up to 12!! Tomorrow we go to the University of Chicago to have his hematoma removed. (Yes, he has to already change his patients but when the doctor says come, that's what you do!) The hematoma has been giving him some pain so the doctor felt it best to remove it and send it in for testing.

When we go to the hospital tomorrow we will be able to see a couple that we met with as a result of the article in the newspaper about Neal's story. Ernie had his transplant last week and is in the stage where his body is saying "What's going on here? What am I suppose to do with these new cells?" We look forward on seeing them and encouraging them.

Please pray for Neal's stamina as he ramps back up to working on a regular basis.

Also on this milestone day is out youngest son's, Collin, 17th birthday along with my mother's. A big day!

Thank you for your prayers.
On the journey,
Trish

Good news - just bleeding

2011-08-10T19:09:00.002-04:00

We received very good news today that the lump in my side is a hematoma - a lump of blood - in my side with no signs of lymphoma!!! Weird to say it is good news that there was just bleeding.
At U of C they did a needle biopsy - yes, they poke a needle in my side (the lump). They found no signs of lymphoma. We now wait a couple weeks for another CT scan to compare. Previous two CT show no changes.
God again provided us peace midst the turmoil. A daily reliance on God. It again was so comforting to know people from around the world were again praying for us! Thank you all.

An unexpected visit to U of C

2011-07-30T16:57:00.002-04:00

Well, we made an unexpected trip to U of Chicago as I was having some side pain with a little swelling that has been there for several months. Bottom line - he is leaning toward it being bleeding in the biopsy surgery site vs. lymphoma.
A CT scan is scheduled Aug 8 to see if any changes have occurred. My MD scratched his head a bit as well but to me that is good.
It was interesting to have my bone marrow test again. Very comfortable as my PA Jean assisted a physician doing her fellowship. Jean is a Christ follower and the only one on her unit. We talked and she said that people she works with are neutral on faith. Not antagonistic but bland on engaging or interest. As I laid on the table during the procedure the MD talked about my psychological adjustment and dealing with my transplant. I was able to very boldly tell her the truth - that God had given me peace about it. They are very bright people in medicine but ignorant in faith. My hope is that all in the room would witness Jesus.
A lesson I would pass along is to not be intimidated on presenting the truth for though many are smart, they are also ignorant and in need of the truth. Don't let their position in life intimidate you from introducing them to the true source of eternal Life - Jesus.

Celebrating wellness

2011-07-10T19:08:00.002-04:00

We had a great visit at the U of Chicago Thursday. My numbers are up (still not as high as desired but up). My MD was pleased and very positive that it will be just a matter of time until they stay up where they belong - he says it can take up to a year to finally stay up.
With that news Trish asked "When can Neal go back to work?" Notice, I didn't ask that, she did. I wonder why? So the answer is after Labor Day. I will start out part time and work my stamina up. I am already there doing administrative work and seeing a few orthodontic patients. I am definitely ready to roll!
We had a great weekend at our Red Arrow Run Car Show. We signed up 29 bone marrow donors who would be willing to give marrow to people like me who are in need of a transplant.
Although there are 9 million people on the BeTheMatch.org registry, the match chances are only 1 out of 354.
There was also a great newspaper article about Karl's and my story in three local newspapers -

http://www.southbendtribune.com/news/sbt-bone-marrow-transplant-prompts-bridgman-men-to-tell-their-story-20110706,0,1218446.story

The author is looking at also submitting it to Guideposts, a Christian "Readers Digest".

Through the article we had a chance to counsel a local couple where the husband is scheduled for a marrow transplant at U of C in September. It is interesting how we are being used by God through our experience. We were able to share our experience and pray with them.

What experiences has God brought you through that you can use to minister to others. In our culture, sharing our trials can be difficult for many reasons. You will find sharing opens up many avenues!

An amazing wedding!!

2011-07-04T19:31:00.006-04:00

We got home tonight from Indianapolis after an exciting weekend and wedding! Everything was beautiful. When Neal walked Whitney down the aisle I remembered back to when he found out he had cancer. He emotionally wondered if he would be able to walk her down the isle at her wedding. He did, praise God!!

We'll post more details after we get some rest!

Praise God!!

2011-07-01T08:31:00.002-04:00

Neal had his blood drawn yesterday--his white count is an amazing 10.9!!! The booster shot worked and lots of prayer! Granted, it is only temporary but it is up for this weekend!!! Thanks to all of you who prayed.

Neal and I arrived in Indy yesterday late afternoon. After dinner with Ty and Whitney we all had "jobs" to do. Whitney is so organized. If teaching doesn't work out for her she would make a great wedding planner! Today we have another big list of things to do. It's so exciting!

We still need to pray that it doesn't rain on Sunday :)

On the journey,
Trish

Relay for Life

2011-06-25T18:24:00.003-04:00

Neal and I went to Relay for Life survivor walk this morning. This was our first year to experience Relay from the cancer survivor side. It was very emotional for me. It was very encouraging to see so many other purple survivor shirts. The survivors take the first lap around the fairgrounds while everyone else is on the sidelines cheering you on. I thought of the the verse in Hebrews 12 that talks about the great cloud of witnesses that surrounds us. We all need people to encourage and walk along side of us.

Neal here: The Relay for Life was very encouraging and meaningful because I could walk hand in hand around the track with my wife. You can't walk holding hands alone, can you. I was also impressed by the large number of survivors. One fellow in his seventies had 4 different cancers in 17 years.
My numbers are low so for the wedding I received a booster shot today. I told them I had to deal with 200 people and didn't really want to wear a facemask down the aisle. :)

PRAYER REQUEST!

2011-06-24T20:40:00.003-04:00

It's been a while since we have posted. Neal has been feeling good, even going into work to visit and do some administrative stuff. His white count and platelets have been going up then down. But the past few weeks they continue to go downward. His white count is 1.3 and his platelets are 60,000. The doctor says this is normal but if his platelets drop to below 50,000 then that's an issue. The big hitch is that Whitney gets married next Sunday, July 3 in Indianapolis. Neal's numbers need to go up. We really don't want him to walk Whitney down the isle with a mask on!
The University of Chicago doctor called the local oncologist here and has Neal going to our hospital tomorrow to get a Nuelasta shot. This should help his white count go up and hopefully stay up.

Our pray request is that Neal's white count goes up substantially and his platelets don't go below 50,000.

Please pray for the wedding next Sunday. The ceremony is outside so we are praying for good weather. We are blessed to have Ty join our family. Whitney has been doing a fantastic job with the plans. I just do what she asks me to!

We have had Lane with us this past week while Grant and Jenni take a vacation before the next baby comes in November. I forgot how tiring a toddler can be! We have really enjoyed him. Both Karsten and Collin have been a great help. He have dragged out the duplos, Brio train, match box cars, trucks, sidewalk chalk, bubbles, books and books. Good thing I kept a lot of the boys things especially with 2 grandsons!

On the journey,
Trish

2 Years

2011-06-02T20:45:00.000-04:00

This is Trish posting. Two years ago today I had my bi-lateral mastectomy, so I have been cancer free for 2 years!:) I had my annual check-up and things look good. Ironically my white count continues to be low (2.9) but since everything else was fine doctors are not concerned. It takes some people longer to recover from chemo and radiation and I am one of them. I continue to take Arimidex for 3 more years. The down side of that is that it has given me osteoporosis so I am on another drug for that problem.

Neal goes back to The University of Chicago on June 9. He has had his blood work done here the past two weeks and they fax it over to U of C. His counts continue to up and down but he is feeling great. He has been spending more time at the office doing paper work and visiting with staff and patients. I can tell he is getting antsy to get back to work. Doctors give no clue as to when that will be.

Alot has happened in two years but Neal and I "know that in all things God works for good of those who love him, who have been called according to his good purpose." Romans 8:28. God is good.

On the journey,
Trish

Neal, you are unremarkable!

2011-05-20T20:45:00.002-04:00

Unremarkable. That is the term used by the physicians reading all my tests. In this case, unremarkable is excellent. It means nothing of note was found. We are so thankful for that great report.
My blood levels are great other than my WBC count still coasting low which is also not uncommon. If I didn't know I was low, I couldn't tell by how I feel. God is good, all the time!
Thank you for all your support and prayers!
Neal

100 DAYS

2011-05-13T21:28:00.003-04:00

Dear Friends,
100 DAYS! 100 Days since my bone marrow transplant. This is considered a major milestone. I spent the day testing at U of Chicago like a CT scan, PET scan, pulmonary test and even more. You need to know that I studied hard :) I have been blessed with recovering good health. There are a couple of side effects we are working on but it doesn't noticebly affect me.
I celebrated my birthday May 11 - as one person told me it is a Victory Celebration. There is so much to give thanks to God. The recovery to levels of immunity protection is slow but going positive at this point. Trish and I truly appreciate the support you have provided us through prayers, words of encouragement, cards, phone call and more!
We now find a friend has the same kind of lobular breast cancer Trish had. God place Trish at the store just after their doctors consult where Trish could encourage and counsel. Others say they have family who were recently diagnosed as well. This is part of our ministry that God has provided us through our hard times. He gives each of us hard times to know him better but for us to share Him and his compassion with others who go through trials so much like ours. What trials has God entrusted you with?

Continuing to need God,
Neal

Happy Late Mother's Day!

2011-05-10T10:44:00.002-04:00

We had a very fun but busy weekend with all the kids home. Saturday we had a family wedding shower for Whitney with many of the cousins coming in from Wisconsin. Saturday night we had family dinner at our house (28 of us!)to celebrate Mother's Day, Neal's dad's birthday (which was Monday) and Neal's birthday (which is tomorrow). Sunday the boys in our house fixed and cleaned up dinner for Mother's Day!

Now on to Neal, he had a good doctor's appointment last Thursday. His white count was 2.3 so it is going up! He was taken off of prograf (the anti-rejection medicine) and Avalox (an anti-biotic). This is the big week. Friday is day 100! This is the big milestone that doctors keep talking about. On Friday Neal will have blood drawn, a plumonary test, bone marrow biopsy and PET and CT scan to see how his body is accepting the new cells.

God has been faithful to walk along side us during this journey.

On the journey,
Trish

2011-04-29T10:47:00.004-04:00

Neal and I just completed his first walk to the beach and back since he has been back home. He did great! He has been lifting weights at home to help build his strength. We did not have to go to Chicago this week. Neal did have to go to his oncologist office here to have his blood drawn and faxed over to U of C. His hemoglobin and platelets are up but his WBC went back down (1.9). The nurse from U of C called and didn't seem too concerned. Neal sees the doctor there next Thursday.

The doctor did give Neal permission to go to church on Easter as long as he sat in the back and wore his mask. He enjoyed seeing people and being in church since it has been since December. He is still to stay away from large crowds.

We had some of our kids home for Easter: Britton, Michelle and Eli and Karsten home from Taylor. Whitney and my sister were going to come but both were sick. The Smith's joined us for a meal together to celebrate Christ's resurrection. We look forward on having everyone home the weekend of Mother's Day to celebrate Neal and his dad's birthday and having a family shower for Whitney.

The words to the old hymn "He Lives" spoke to Neal and I especially this year.

I serve a risen Savior, He's in the world today;
I know that He is living, whatever men may say;
I see His hand of mercy, I hear his voice of cheer,
And just the time I need Him He's always near.

In all the wold around me I see His loving care,
And tho' my heart grows weary I never will depair;
I know that He is leading thro' all the stormy blast,
The day of His appearing will come at last.

Rejoice, rejoice, O Christian, lift up your voice and sing
Eternal hallelujahs to Jesus Christ the King!
The Hope of all who seek Him, the Help of all who find,
None other is so loving, so good and kind.

CHORUS:
He lives, He lives, Christ Jesus lives today! He walks with me
and talks with me along life's narrow way. He lives, He lives,
salvation to impart! You ask me how I know He lives?
He lives within my heart.
A.H. Ackley

We have seen God's loving care and hand of mercy these past couple of years. We know He is always near so we don't have to despair. He lives! We pray that you know Christ this way. He is the only way to have true peace and comfort in times of storms.

Rejoicing that He lives,
Trish

Good report

2011-04-21T21:36:00.002-04:00

Good report today. Numbers are moving upward and I go back in two weeks. The doctor seemed pleased at the progress, though it is slow. Today is Day 78 (the first 100 days are the most critical they say) and so far no major problems. I am restricted from large crowds for a few more weeks so will enjoy meeting with small groups. I plan to sit in the back of church this week. It has been a long time to worship in a large group.
I lift some weights and walk to build up my stamina. I am thankful to not have major symptoms.
Each day is a blessing to use.
Neal

On the upswing!

2011-04-16T08:05:00.003-04:00

The doctor was optomistic at Neal's appointment on Thursday. Neal's white count was up to 2.8 and his hemoglobin was 10.5. His platelets were 46,000 which the doctor was not too concerned about. The doctor felt pretty sure that Neal's drop in numbers were from a med that he was on and not a virus since his white count was going back up. We see the doctor again next Thursday but then he said we could come every 2 weeks!! Neal is feeling pretty good but needs to drink more fluids to keep his kidneys healthy. He had his med that helps him engraf adjusted (prograf)but overall is doing great.

We bought Neal a new pair of jeans--3 inches smaller than what he was wearing. He has lost about 28 pounds and says that he is only 3-4 pounds over what he weighed in high school! I reminded him he is 52 not 16 and he needs to put on some weight. He can't seem to eat much at meals so tries to eat several times throughout the day. He is also drinking Ensure to get some protien.

We are adjusting back at home. It certainly takes longer to clean our house than the tiny apaprtment!

Blessings,
Trish

Getting adjusted...

2011-04-12T16:57:00.002-04:00

It's great to be home although it's been a rough week for Neal. He went to his local oncologist yesterday and his WBC is climbing (1.3) but his platelets are down (61,000). We will go into Chicago on Thursday and have things checked out again and see the doctor. Neal has been very fatigued, battled diarrhea, low grade temp over the weekend and vomiting last night. He is feeling better today. :)

I am getting back into the routine at work, at home and gettig caught up with friends. I have felt so disconnected and out of touch so I am sure it will take few days to get back into things.

Thanks for your prayers!

On the journey,
Trish

Home at last!

2011-04-07T21:44:00.003-04:00

After a long doctor's appointment this afternoon, we arrived in Bridgman about 7PM! January 25 seems so long ago but that is when Neal started his treatment at the University of Chicago. There was snow on the ground and gas was $3.69 @ gallon in Chicago. Now the crocus and daffodils are coming up and gas was $4.24 @ gallon! It was fun living in Chicago for a time. Our apartment was great, walking distance to everything we needed. We seemed to have acquired many more things with each visit home so the car was packed in every nook and cranny. Collin was squished in the back seat.

Neal's WBC was .3 and his platelettes were 78,000 today. The doctor took him off the valcyte and put him on valcyclovir and gave him a neulasta shot to help raise the WBC. Neal is to take it easy for the next week until his numbers come back up, so he'll be staying home. He has not been feeling well and has been fatigued. He will go to Lakeland to have his blood drawn on Monday and will see the doctor in Chicago next Thursday.

Please pray that Neal's numbers go back up and pray for me as I adjust back to the routine and demands of home.

It's great to be home and we look forward to sleeping in our own bed.

On the journey,
Trish

White count down again...

2011-04-05T12:34:00.002-04:00

Neal had another appointment yesterday to have his blood drawn. His white count is .5 so he received another neupogin shot to raise the WBC. The doctor said that when they switched his med low white count is a side effect. We will discuss on Thursday about taking him off the valcyte. Still no problem going home, we may have to drive in to U of C more than once a week.

On the journey,
Trish

2011-03-31T22:54:00.002-04:00

Neal had another doctor's appointment today. His numbers are still low (WBC 1.4, platelettes 121,000) so he got another shot of neupogin to help raise his white count. He goes back on Monday again to get it checked.

My parents brought Collin over to us this morning. They came up from Florida to stay with him for a couple weeks. They headed out driving back to Florida. We walked over to the drugstore to get Collin some snacks. He came with us to Neal's appointment and then he wanted to see the Trump Towers. We drove over there on our way to Mindway Airport. My sister met us close by and the two of them flew down to Orlando to stay with my brother and his family for a few days. They will end up at my parents house for a couple days. Neal and I will pick up Collin next week, go to Neal's doctor's appointment and then head back to Bridgman for good!!! Making all these arrangements from Collin has been a challenge but so many people have really stepped up to help us out. We are very grateful. It has not been the most ideal situation but we know that God is in control and His ways are better than our ways.

7 days!
On the journey,
Trish

Coming Home!!!!

2011-03-28T22:01:00.003-04:00

Neal had to go back to the doctor on Friday to have his blood tested again since his numbers were low. He was taken off the study drug he was taking and put on a different drug. We went back to the doctor today for more blood work and to see the doctor. Although his numbers are still low (WBC 1.2, platelettes 150,000 and hemoglobin 10.4) the doctor said this is not uncommon just more of a nuisance. He gave us the okay to go home on April 7 for good!!!! We are getting tired of being here although it has been good to be close to the hospital and given Neal good time to heal. We will have to travel weekly back for doctor appointments but we shouldn't have to worry about a snow storm!

Neal is still not out of the woods, but he has done very well so far. The doctors are pleased with his progress.

10 days!!!!

On the journey,
Trish

Day T-50!

2011-03-24T21:14:00.003-04:00

Today is day 50 since Neal's stem cell transplant! We walked to his doctor's appointment. He is feeling great so we were surprised and disappointed to learn that his numbers are low. His WBC is 1.3, hemoglobin is 9.9, and platelettes are 166,000. This is not uncommon and not serious. He will go back to the doctor on Monday to check his numbers again.

On the journey,
Trish

Field Trip #2

2011-03-22T22:07:00.002-04:00

Neal and I went home Sunday afternoon and returned to Chicago this afternoon. My parents came up from Florida on Friday and Karsten came home for his spring break. He is on a mission this week to get a summer job! Britton and Eli came down Monday for a visit also. Sunday evening Neal and I went to our Community Group and had dinner with them. It has been months since we have been able to be with them so it was great! I worked at the office on Monday. It is stressful for me to go home because I have to try to get all the urgent work done at the office in a short amount of time. But on the other hand it is wonderful to visit with everyone and have a change of pace. Neal's staff is doing a wonderful job handling things at the office and being flexible. We really appreciate all they are doing to keep the practice going.

Since our last home visit I scrapbooked 240 pages in Collin's books. I am almost caught up with his books but need to find some missing pictures. That could be a huge undertaking. I have many year's gaps in all the other kid's books but don't want someone to get sick so I can get them done. :)

Neal has his next doctor's appointment this Thursday. I'll post later that day. He continues to do well.

On the journey,
Trish

Words of encouragement - power you have been given

2011-03-17T23:13:00.002-04:00

Great visit today with the doctor. Numbers are great, and boring which we want. I have felt very well the last two days, almost normal (but not the endurance). The weather was so beautiful we walked 30 minutes to the hospital and back. It felt really good plus the architecture of the buildings is very interesting. You don't always appreciate what you miss until it is gone. A hot shower, getting out of bed without having health issues, aches, pains, fevers- being able to walk outside and enjoy the weather. So many blessings to enjoy.
We had a chance to visit with George, a 69 y.o. patient who is 8 days post transplant, just to encourage him that it gets better each day. It is a long process, with lots of boredom and uncertainty. He is doing very well.
While recovering, Trish and I met a family whose mother had non treatable leukemia. Taking a lesson from the notes of encouragement we received,I jotted her a note from II Corinthians 4:8-9 "We are pressed on every side by troubles, but we are not crushed and broken. God never abandons us. We get knocked down, but we get up again and keep going."

We never met her and she passed away a week after my discharge. As we talked to the nurse today she commented how much the lady and her family appreciated the words of encouragement. Words of encouragement are powerful - share some with those you know with the promise of God. He gave us 66 books of promises in the Bible - what a gift!

On the journey,
Neal

T40!

2011-03-14T22:52:00.002-04:00

Neal is feeling well, just having difficulty sleeping through the night. The doctor gave him Ambien last week but they don't seem to help him. His rash is getting better.

Neal and I went for walk today on a different route than usual. We walked by a gas station. Gas is $3.89 a gallon! It's a blessing to be here at this time since we don't have to drive places. We can walk to everything we need plus get exercise and fresh air! At home I put in a tank of gas every week. I was reminded to look for the blessings God provides every day.

"Praise the Lord, my soul, and forget not all his benefits...." Psalm 103:2

On the journey,
Trish

Field Trip!

2011-03-11T10:07:00.003-05:00

Neal had his first visit home since January 25! We left Tuesday afternoon and came back yesterday. I worked at the office Wednesday and Neal stopped in to say hi to the staff. It was good to connect with Collin, this has been hard on him. We have tried to keep him at our house with different family and friends for stability but occasionally he sleeps at someone else's house. My parents came up from Florida for a couple weeks, my sister has taken some weekends, Grant, Jenni and Lane came for a week to stay with Collin, Whitney and Ty took a weekend, Britton and Michelle had him last weekend, my friend Lois stayed at our house for a few days, Dale and Bobbie have had days in between and this week Collin is staying at one of his friend's house. My parents are coming up again from Florida to stay 2 more weeks, then Cheri and Collin will fly to Florida for part of his spring break to visit my brother and his family. By then my parents will be back home and they will stay with them a couple more days and fly back to Chicago to spend a couple days with us at the apartment and finish up with a few more days at our house. We are praying that we can be back to Bridgman full time by April 15 (that's how long I have the apartment for). Continue to pray for Collin as he deals with this on top of normal teenage stuff.

Neal had a doctor's appointment yesterday. His numbers are continuing to climb: 250,000 platelettes, 4.8 white count and 10.4 hemoglobin. Yahoo!!! He continues to have the rash on his face which looks like a sun burn and a red throat but nothing to concerning. We don't have the results back yet from his bone marrow biopsy.

On the journey,
Trish

Really Hip

2011-03-05T00:48:00.003-05:00

Good numbers today as I had more blood tests and a bone marrow sampling from my hip. It sounds painful but wasn't bad at all with local anesthetic. The test will see how much of the new marrow is there.
My platelets which stop bleeding were doubled in one week to 212,000
My white blood cells went from 2 to 4.8 (min of 5 desired)
Those little stem cells are busy. It is also a great excuse when I do something goofy I can always blame Karl's cells since he donated them.
I have a bit of a rash that they think is caused by virus so pray for quick healing of that.
I was reading Acts 8:26 where "Now an angel of the Lord said to Philip, "Go south to the road-the desert road - that goes down from Jerusalem to Gaza." How many of us would choose the desert road? My treatment has been a desert road. Yet look how God used Philip to explain Jesus to the Ethiopian official. How will God use me or you when we travel the desert road. I encourage you to read the account.

Blessings,
Neal

T26

2011-03-01T18:52:00.002-05:00

Neal is feeling good today. He has good color and has kept everything down for a couple days. We had an old family friend stop by this afternoon for a visit and yesterday one of our employees had a doctor's appointment here at the U of Chicago. Kristie, her daughter and another employee stopped by and brought a box of mail. We are overwhelmed by the cards and visits from people from connections from many places made over the years. We got a card yesterday from one of the parents from my first teaching job and church in Ann Arbor years ago! It is very humbling knowing so many people are praying for us. The body of Christ in action.

I think my problem with the bread making was the water was too hot for the yeast. I'll try again when these loaves are gone. :)

Nothing on the schedule for tomorrow. Thursday Neal has a doctor's appointment and Friday has a bone marrow biopsy in honor of his 30th day on Saturday!

On the journey,
Trish

T24

2011-02-27T19:17:00.003-05:00

We've had a few days of visitors: Saturday my sister and Collin visited, today Neal's Mom and Dad, brother Karl and his wife Jamie came. Neal is feeling pretty good--just tired. Still throws up occasionally. We did have a nice long walk this morning.

Well, my bread making skills are lacking. The last rise did not rise completely. Any suggestions as to why???? The bread turned out dense but makes great toast!

On the journey,
Trish

This is really T21...

2011-02-24T20:08:00.003-05:00

We had a nice visit this morning from Grant, Jenni and Lane. They are staying at our house this week with Collin. 1 1/2 hour drive from our house is better than 4 hours from their house in Muncie, especially with an 18 month old! Grant works from his home so is able to work from anywhere.

Neal's sister and husband came yesterday afternoon. Dave actually brought some business papers for us to sign. As long as we go during off hours, Neal can go to resturants. We had a late lunch at a cute cafe a couple blocks from our apartment.

Neal had a doctor's appointment this afternoon. The doctors are very pleased with his progress. His platelets are 128!! Hemoglobin 10.2 and white blood count is 2.0 (that is low but it is his own cells reproducing). Neal finished his injectable antibiotic yesterday so was able to have the line removed from his port today. At his appointment next week they will do a bone marrow test from his hip to see how things are progressing.

To give me something to do I am trying my skills at bread making. I have 2 wheat bread loaves rising so I'll let you know how they turned out! Watch out Dave Brunsting--you may have some competition!

On the journey,
Trish

T21

2011-02-22T10:36:00.002-05:00

Neal is feeling very good. He is able to keep food down. His body is having trouble readjusting to sleeping through the night without nurse interruptions. It is very frustrating to him. Yesterday morning we walked to CVS drugstore. In the afternoon we walked to the train station (I wanted to time it-6 minutes!)and over to 53th St.(we live off of 52nd)to check out Borders and the walking route. Yes, we went into Borders. Doctors said Neal could go into places that do not have large crowds and go to restaurants during off times.

I have some girl friends coming today to visit and go downtown for lunch. Yahoo!

On the journey,
Trish

Our New Home!

2011-02-19T15:58:00.005-05:00

We arrived at our new home for few weeks today about 11AM. After completing a few days having the carpets cleaned at home, working at the office, paying bills at home, connecting with Collin, I left Bridgman early this morning and picked up Neal. After we arrived we unpacked, Neal took a nap and I got groceries. We are only 1 1/2 miles from the hospital, 3 blocks from Obama's house, close to many restuarants, grocery store and Walgreens. There are many one way streets here but I am getting pretty good with directions. One thing I am a little worried about is parallel parking, I'm not very good at it so I will be praying every day for a spot that doesn't require that skill!

The apartment is completely furnished, although I did bring our own bedding. It has 2 bedrooms and 2 baths. (There were no one bedrooms available.) There is a TV, internet, washer and dryer. Our new address is :
5140 S. Kenwood Ave. Apt. 101
Chicago, IL 60615

It feels like we are away on a vacation. I'm sure it will grow old very fast.

On the journey,
Trish

Living room and kitchen

2nd bath, laundry, and master bedroom doorway

2nd bedroom (futon)

Number ignorance

2011-02-18T20:49:00.002-05:00

Today I went for my first follow up visit and after blood tests, received a printout of different numbers. The problem was I didn't understand what they meant at this stage of progress. I needed someone to tell me the value of the numbers. They were all thrilled that the numbers of cells being produced and that it was my new cells that were doing it just 15 days after transplant. I am ahead of the curve and thank God for the progress I am making. I have had just a couple of minor side effects at this time and so thankful!!!! The list of what can happen is long. I still have risks but to this point I am thrilled.

Don Wood has been so serving that he took me to the hospital today for about 3 hours of tests, exam and such. As we sat down to wait for my 2 PM appt., the physician who is running a study I am part of came out so I introduced her to Don. After a few seconds, she realizes that Don and she worked together at the V.A. hospital many years ago. She has words of praise to me about Don and his caring to make it possible for her to go back to medical school while working as a pharmacist. People remember kindness. Who should be more kind than Christ followers? I believe this was no coincidence. She also has a son adopted from Russia like we do.

I fully believe my progress is due to prayers of people. Thank you!
Neal

Free at last!

2011-02-17T17:28:00.002-05:00

Wednesday is freedom day. I was discharged and didn't have to drag the IV pole with me. I even took a shower as they didn't want me to infect the area. Aaahhh, the little things we take for granted. A great hot shower. No more washcloth stuff.

I have about 7 meds to take including giving myself an IV syringe injection (no needle, it goes into the port) by the visiting nurse today. Really feeling quite well other than shoulder pain.

It has been a real blessing to be here at Don and Linda's as I can recover while Trish finishes up some details at home. Then we go to our apartment. Trish is truly a Proverbs 31 woman (read it)

It is odd to sleep without nurse interruptions. I have to reprogram.

While at the hospital, we received lots of mail that was so encouraging. Thank you to those who pray for us as I was quite ill a few days ago and now am doing well. I am still at risk of rejection. We posted some large paper on the wall and attached the cards among Bible verses written on the page. There is something special about receiving a card of encouragement. I encourage you to do that with someone else you know as it lifts spirits more than you know. We all need encouragement, whether it be sickness, job, joblessness, daily life.

God has given me what I need when I need it. The struggle tests my faith - for the good. We again appreciate the support and friendship you give!

Neal

Still here....

2011-02-15T18:17:00.003-05:00

Neal was not discharged after all this afternoon. His white count is still good, 9.1, but his prograf numbers were a little high. Prograf is the drug given to help the cells graf. The staff needs to figure out the correct dose for his body. They think they will have it figured out by tomorrow. He also had a T.E.E. (transesophogeal echogradiogram) to make sure there was no bacteria hiding behind the heart valves. The test was negative.

We received another stack of mail today, lots of personal cards, Valentine/Get Well cards from Whitney's 2nd grade class and thanks to Tracy the 1st graders at Lincoln Elementary in South Haven. We are blessed, overwhelmed and encouraged by everyone's concern and prayers.

We have also appreciated having visitors. Our dear friends from Holland, MI came, the doctor whose family I stayed with in December and a couple we have met through mutual friends that is on day 83 of his transplant.

Join us in praying for a smooth discharge tomorrow!

On the journey,
Trish

Day T13 graduation day!

2011-02-15T12:55:00.000-05:00

Neal will be discharged this afternoon to the home of our friends the Woods. I have been staying with them for the past 2 weeks. I need to go home tonight to get the carpet cleaned, work at the office and get some supplies for the apartment. I will be back Friday night to take Neal to our apartment.

I'll post more later. The internet is down at the hospital so I am posting this on my phone.

Trish

Are you ready....9.3!!!!!

2011-02-14T13:34:00.002-05:00

Day T12: Neal's counts are an amazing 9.3!!! He will most likely be discharged tomorrow afternoon. The infectious disease doctors today are determining his course of antibiotics to go home. Not only are we thrilled but so is the staff.

Since today is Valentine's Day I was reflecting on how God has shown his love for us. We have seen his mighty works, felt his peace, comfort, grace and mercy. Today we claim "You are my God, and I will praise you; you are my God, and I will exalt you. Give thanks to the Lord, for he is good; his love endures forever." Psalm 118:28,29

Praising God,
Trish

Day T11--Big Numbers!!

2011-02-13T12:12:00.002-05:00

NEAL'S COUNTS ARE UP: WBC 4.6!!!!!! His protocal is 5 (5,000, they list it as 5 x 1,000) to be discharged! Yahoo!!! The doctor thinks his numbers will be there by tomorrow and could be discharged by Tuesday!!!
His hemoglobin is 9.4 and his platelettes are 20 (20,000, listed as 20 x 1,000)which the doctor was also pleased with. Also, Neal's kidneys are working fine. His body is still a little swollen but they are going to let his body get rid of the fluid naturally instead of giving him more lasixs. His prograf is going to be converted over to pill form (that is the drug that helps his body engraf)today. The infectious disease doctors need to come up with a plan to convert his antibiotics over to pill form as well.

Neal knew he was feeling better because during the night he woke up thinking about things to be done and ideas that he was able to write down on paper! Just like the old days!

Day T10

2011-02-12T18:14:00.002-05:00

When I got to the hospital this morning Neal was sitting in a chair eating breakfast! He has had no fever so far today, is off of oxygen, and no throwing up!! The nurse just told us his white count 1.6 (goal of 3.5), hemoglobin is 9.3 (13/14 normal for a man)and his platelets are 23 (goal of 100). Yahoooo!

Whitney and Ty came to the hospital so Whitney and I could go to a wedding trunk show at Macy's on State Street. Ty sat with Neal while we were gone. Whitney found her dress!!! It's perfect for her.

We are praying that Neal is on the road to recovery.
Thanks for your prayers.
Trish

T9 update....

2011-02-11T19:43:00.002-05:00

So, I have learned that things can change very quickly here. About an hour after I took the picture of Neal eating Italian ice his temperature went up to 101.8. The doctor called and said that the CT scan showed some infection in his lungs and she was ordering an ultrasound of his abdomen. The Infectious Disease Team came in this afternoon and said they were putting him on an anti-fungal med called Vfend to fight the infection in his lungs. His heart is having to work harder to pump because of the fluid. But now that they know what they are working with and have him on the right meds hopefully he will improve quickly. The ultrasound was negative and his liver function was better. So things are looking better. He is still on oxygen but was able to walk the halls a couple lengths!

A surprise was waiting for us when Neal came back from his test this afternoon: a big envelope full of mail. We were so blessed by the notes people have sent. We have them hanging in our room. They are a testimony to the staff as well. It was the encouragement I needed today. God's timing is good. One verse was especially meaningful: "I have loved you with an everlasting love; I have drawn you with loving kindness. I will build you up again and you will be rebuilt." Jeremiah 31:3-4 God's love is powerful. He is literally rebuilding Neal's body. Go cells go!

I am off to our friends house for a good night's rest:)
Trish

Day T9

2011-02-11T12:14:00.003-05:00

Yesterday afternoon I went to my sister's to do some laundry, get a descent meal and a good night's rest. I got the first two done but I ended up back here to sleep on the cot per Neal's request. At about 4AM when the nurse came in to do vitals, Neal's temp was back up to 101.3, BP 136/88 and he had low oxygen, 86-92 (should be about 93, 100 best. Neal had been on a cannula oxygen tube but they quick put him on a face mask and cranked up the oxygen. The doctor ordered another chest x-ray and had the ICU doctor come in and evaluate him. He was right on the border of being moved to ICU because of low oxygen levels. They decided to wait because he seemed to do better with the extra oxygen. But if any changes in symptoms call right away. Day doctor came about 8:30AM and ordered an EKG of his heart, CT of his chest without contrast (the die could be toxic to his kidneys) and ultrasound of his heart. His temp came back down to 99.1. They know he has a bacterial infection but wondering if it is doing any damage to heart or lungs. The chest x-ray from earlier this morning did show he had some fluid on his lungs. Neal also received more lasixs to help flush out fluids. He is taking in more than he is putting out so this will help.

On a positive note: The doctor told Neal that his white count is .5 which means it is moving in a positive direction indicating that his body is starting to make cells! He is by no means out of the woods yet but that is encouraging!

Neal just got back from his tests and is feeling much better and has no fever! Praise God!

My patience and serving with a happy heart is being put to the test. I don't work well with little sleep and after 3 nights of sleeping here I am running on fumes. Please pray for my stamina and lvoing attitude:)

I'll post when we get test results.

On the journey,
Trish

Neal just got back from tests. He is smiling, no pain, and eating lemon ice! This is the most coherant I have seen him in 3 days!

Day T8 What a night!

2011-02-10T09:50:00.001-05:00

The doctor came at 10:40PM last night to take out Neal's Hickman line. It came out with no difficulty. At 1:45 AM Neal woke not able to breathe well. The staff came very quickly. They gave him oxygen right away. His temp was 103.6 and his heart rate was 230 (should be between 60-80). When they sat him up it was easier to breath. A doctor came right away and he ordered an EKG which came right away. It was normal just that he had a fast heart rate. The doctor drew blood to check Neal's blood oxygen levels. His lungs were crackly so ordered a chest x-ray. That also came to his room. The x-ray showed a little fluid on his lungs but did not appear to be any phnemonia. Since Neal had received so much fluid that day and had a temp all day they felt the fluids have backed up in his lungs. He received some lasiks to help the kidneys flush the excess fluids out. The blood oxygen levels were okay. The whole process was done by 3AM! Praise God it was nothing serious!

8AM NO FEVER!! His hemoglobin is 7.4 so will need some blood. He still has diarrhea and just started vomittimg again. Neal's face was very puffy last night and that is also better.

We are praying that he is turning the corner.

Trish

The latest....

2011-02-09T18:25:00.003-05:00

The transplant specialist just came into Neal's room to let us know what is going on. He does have bacteria in his blood taken from his hickman catheter as well as his peripheral line. They are still waiting for the specific species. The cuff on his hickman line is showing which could be a source of infection. It may have gotten pulled when he went down for his chest x-ray. A doctor is coming in tonight to remove the line and they will not put a new one in. The nurse is accessing his port right now that he has had since his rounds of chemo at home to use to administer some of his drugs. Some of the drugs can't be run together in the same line so they will probably have to also run an I-V line from his arm. Since I-V lines are only good for about 4 days, the nurse is hoping that Neal will be on the up-swing by then and won't need new lines. By then many of the drugs can be taken orally. His temperature still fluctuates between 101-103 and continues to have diarrhea and vomitting.

Neal has posted on his room wall here 2Corinthians 4:8-9 "We are pressed on every side by troubles, but we are not crushed and broken. God never abandons us. We get knocked down but we get up again and keep going."

He is knocked down right now but God is with us. Amen!

The couple I am staying with are bringing me my things tonight so I can spend another night here. Three days without showering and changing clothes might be a little much! They are such a blessing:)

Trish

Day T7

2011-02-09T10:01:00.003-05:00

Good thing I stayed the night. God is so good-he knows what are needs are. Neal threw up at 3:45AM and a little while ago had some diarrhea. I normally don't arrive until around 9:30(IL time) so I was here to help him. The doctor came by earlier and said that one of the cultures does show a bacteria but they are waiting on more specific details. They drew more blood for additional tests. His white counts yesterday were -.1 and today are +.1 which is still super low (should be around 10). He is also getting some fluids because he is not eating or drinking much. Yesterday he had an Italian ice and that was it. He doesn't have much energy to even drink much of anything except a little blue gatorade. He feels miserable. He still has a fever between 101-103.

The joy of the Lord is our strength (Neh 8:10) He does enjoy listening to some praise music to soothe his soul.

On the journey,
Trish

Still fever....

2011-02-08T21:38:00.002-05:00

It's 8:40 PM and Neal still has a fever. It goes between 101 and 103. No test results as it will take a while for cultures to grow. I'm going to spend the night here on the cot.

Day T-6 Fever

2011-02-08T11:20:00.002-05:00

This morning when I arrived I was met by the nurse telling me Neal has a 102.9 fever. This is common and could just be his body's way of reacting to a low immune system or he could have some sort of infection. They have started him on a broad spectrum antibiotic until they determine what is causing the fever. He has been coughing the past couple of days (which is also common) so they have ordered a chest x-ray as well as blood and urine tests. His hemoglobin and platelets are also low which means he needs a blood transfusion and platelets. They are holding on this until his test results come back.

Please pray they can determine the source of the fever and get it under control.

On the journey,
Trish

Day T3

2011-02-05T19:23:00.002-05:00

Neal has been doing well, mainly very fatigued and not eating much. He naps a lot and tries to walk the halls for exercise. He is not allowed to leave this wing. He has battled some nausea but the drugs are plentiful here to combat that. We have been told that days 4-7 could be his worst as his immune system bottoms out from the chemo. He could spike a fever, have diarrhea, chills, pick up an infection, etc.

I had the pleasure of meeting Whitney near Oakbrook to look for wedding dresses today. We found one she really liked at the first shop but are going to continue to look some more. It looks like the wedding will be July 3 in Indianapolis. She has already found a place for the wedding and reception, talked with the caterer, and photographer, all in a week! She ended up not having school all week because of the ice and snow which allowed her to do some serious planning.

Side streets here in Chicago are still a mess. Cars park along the side of the road and were plowed in. Plus most roads are only plowed for traffic to go in one direction which causes problems. Thankfully the parking garage here is cleared!

On the journey,
Trish

Transplant Day!

2011-02-02T14:59:00.005-05:00

The doctors tells us that transplant day is like a new birthday, new life giving cells! The transplant happened at 11:00AM and was over by 11:30AM. Before hand they gave Neal some hydrocrotizon, benydryl and ativan to help him relax and prevent nausea. He has had no side effects, just sleeping most of the time so far. I have enclosed 2 pictures and one video so you can see how things went. Not a very exciting procedure but still very thankful for Karl's cells.:) Neal's immune system will continue to bottom out and these next few days are critical to not get any infections. It will take about 12 days for the cells to find the marrow and start producing new cells. Please pray that Neal 1. Does not have any side effects or minimal 2. That he does not get any infections 3. His body accepts the new cells

On the journey, Trish
Feb 2, 2011 Happy Birthday Neal!

6 days of treament--day of rest

2011-02-01T21:51:00.003-05:00

Reminds me of God, he created everything in 6 days and then rested! Neal felt very good today. He did have to have a blood transfusion because his hemoglobin and platelets were low. Tomorrow is his big day!

Today was not a day of rest for me. This afternoon the nurse asked if I brought an overnight bag because of the snow storm. It wasn't snowing badly yet so I decided to go back to where I am staying to get some things. Of course when I got on the road the conditions started getting worse. The expressways were backed up with traffic, everyone going home early. I made the 30 minute trip in 2 hours. My hosts suggested I wait until about 6:30 to go back to avoid traffic. So I enjoyed a delicious meal (a nice break from hospital food). The drive back was nerve wracking. The traffic was better but I still went at a crawl because the conditions were bad. My windshield kept icing up so had to pull over a couple times to clear the wipers, which was probably dangerous to do but I couldn't see. Lakeshore Drive was a white out. I had a hard time seeing where I was going. Got stuck in a snow drift because snow was blowing across the road. After rocking the car back and forth I finally spun around into a better lane of traffic. Fortuntely no cars were coming. Which was also a bad thing because it was difficult to see where the road was with no cars in front of me. I was so scared. My car started to drift over to the side again but this time it was my exit! Thank you Lord! It's by the grace of God that I made it back to the hospital safely! So, I get to stay the night in Neal's room on a cot. The nurse said they were calling it an internal disaster because of being short staffed. The ones who were here are still here!

"For he will command his angels concerning you to guard you in all your ways." Psalm 91:11 He definetly guarded my ways today:)

Resting in the shelter of His arms,
Trish

Day T-2

2011-01-31T20:37:00.002-05:00

Neal has done remarkably well today. This could have been one of his worst days. Thanks to all of you that prayed Neal would tolerate today's treatment! He packed his mouth with ice, ate ice cream, popcicles, and sorbet for 6 hours to help prevent mouth and throat sores. It worked plus the prayers! Neal is done with chemo but is receiving anti-viral meds.

On the journey,
Trish

Looks like we're having a summer wedding!!

2011-01-30T15:30:00.004-05:00

Yesterday I (Trish) went home in the afternoon to celebrate my sister's 50th birthday and Karsten's 19th birthday. My sister has been staying at our house with Collin and my parents arrived yesterday from Florida to stay for the next couple of weeks. Karsten was home for his J-term break and goes back to Taylor today to start 2nd semester. The other kids also came home so we had a full house.

Whitney has been dating a young man since May, who also graduated from Taylor, since they got reacquainted at some mutual friends weddings. Well, yesterday Ty proposed! He talked with Neal and I a couple weeks ago and since came up with a creative way to ask Whitney to marry him. Ty is a pharmacy tech at Walgreens. The pharmasist agreed to make a label with Whitney's name from her dad (he was in the system since he perscribes meds). Ty had been "complaining" of sore gums this week. So when they got to our house yesterday they asked if Neal could call in a scrip for Ty's gums. Neal talked with Ty about his symptoms and "called in" a cream. Britton and Ty went to Walgreens in Stevensville to pick it up. They actually met Ty's parents at the Bridgman McDonalds to get the ring (which was in a pill bottle) and kill some time. When they arrived back at our house Ty went up to Whitney's room to "apply the cream." Ty asked Whitney to read the directions. The bottle had the scientific name for a diamond. Directions said to place on the ring finer and marry Ty. Signed by her dad. Of course she said yes and came downstairs to celebrate with our family and Ty's parent's. We video chatted with Neal so he could hear and see what was going on. Looks like we are going to have a summer wedding! It's something for Neal to look forward to:)

Neal is feeling okay. He hasn't had the rash or chills like they said he would from the chemo Clorarabin and Campath. Praise God! When he feels nauseous he takes some meds to ward it off. That makes him sleepy so he doesn't feel like doing much. Tomorrow he will have the chemo called Melphalan which will be hard on his body. He will need to keep his mouth packed with ice and other cold things to prevent mouth and throat sores. Tuesday will be a day of rest. Wednesday is the big transplant day!

Pray for no mouth or throat sores tomorrow.

On the journey,
Trish

T-5

2011-01-28T20:50:00.002-05:00

Neal is doing pretty well, no major side effects. Praise God! He didn't sleep well last night so he slept on and off most of the day and dealt with some headaches.

I head for home tomorrow to celebrate some birthdays. I will return Sunday morning.

On the journey,
Trish

Day T-7

2011-01-26T19:28:00.003-05:00

Today went well for Neal. No side effects so far just a slight fever this afternoon. He is very tired.

God has brought a Christian couple into our path through some mutual friends that is about 3/4 of his way done with his transplant process. We talked with them over the phone before we came and I had the opportunity to meet them today. Steve was in the hospital for about 3 weeks and then has been in an apartment nearby. His wife came to pick me up today and show me their apartment. It was a blessing to talk with them and hear their experience and gleen some of their tips. They will stop by tomorrow after his doctor's appointment if he is well enough to meet Neal. They are hoping to go home this weekend. Unfortunetly all the apartments in their building are rented but I put my name on a list. I have a few more leads that I will check out tomorrow. Steve and Dawn are an unexpected blessing! God gives us what we need when we don't even know we need it.

Another blessing: I am staying with my cousin and her husband this week. Their apartment is very easy to get to, only 15 minutes away, free parking and no traffic!

Here are some prayer requests:
1. Pray that Neal will have minimal side effects.
2. Pray that I can find an affordable furnished apartment to rent for when Neal is released from the hospital. He needs to stay close by the hospital.

On the journey,
Trish

We're Here!

2011-01-25T18:51:00.005-05:00

Neal and I arrived at the University of Chicago Mitchell Hospital this morning. Neal had his blood drawn, went to admitting and then down to out patient surgery to have his Hickman catheter put in. That is the line where his chemo, meds, and cells will be administered. We had to wait for his room to be ready so we didn't get here until about 4:30. Neal will be able to rest tonight and get his chemo starting in the morning.

We are encouraged to decorate the room, since he'll be spending so much time in it! So, we've put up a poster the kids made Neal for Christmas of various pictures of our family. Neal also received word yesterday that our friend in Zambia lead a group of pastors there in prayer for him. We felt humbled and overwhelmed knowing people all over the world are praying for Neal. They sent this picture showing them praying. Kimberly, your picture is up also!

If you want to send Neal cards:
University of Chicago Bernard Mitchell Hospital
6NW Neal Smith
5841 S. Maryland Ave. MC 6041
Chicago, IL 60637-1470

More tomorrow,
Trish
PS Today is Day -8. They count backward until his transplant day. Transplant day is Day 0 and then goes up.

Thank you Karl!!!

2011-01-24T17:05:00.004-05:00

Today was harvest day for Karl. He had shots for the past 4 days to trick his stem cells out of the marrow and into the blood and produce lots of them. Today they took some of his blood, ran it through a machine to seperate the stem cells out and then put his blood back into him. Amazing--alot easier than a few years ago when they had to go into the marrow itself to get the cells which was painful. By the smile on Karl's face you can see that this process is much easier.
A BIG THANK YOU KARL! WE LOVE YOU!!!!!!!!!!!!

Trish and Neal

1 year ago.....

2011-01-22T15:08:00.003-05:00

One year ago on January 20 I finished my last radiation for breast cancer. Wow, alot has happened since then. I never dreamed we would be facing cancer again but God is in control and His ways are best.

Collin's and my accomodations are coming along for this next month. I will start at my cousins house which is about 9 miles away from the hospital and then move to some friends house for a week. Looks like I may move to an Extended Stay hotel after that. Collin has several family and friends helping out. He will mostly be at our house with different ones staying with him and he also is staying at one of his friends house for a few days.

I had a gentleman come from a carpet cleaning service this week to give me an estimate to clean our whole house carpet, couches, chairs, rugs, and our mattress before Neal comes home. The man ended up giving us a huge discount because it was for medical purposes. I cried when the guy told me. What a blessing.

I'll let you know how things go when we get started this week. Not sure how well Neal will feel to post.

Thanks for your prayers.
Trish

Tuesday is the day!

2011-01-20T18:53:00.002-05:00

We have learned that Tuesday is the day for me to start my transplant therapy. We are thankful and praise God that my PET scan showed no active cancer! It is in remission but not gone.
The next step is the transplant. I will have 5 days of chemo that I am told makes me feel like I have the flu -- oh great.....something to look forward to but I know I have been through worse. I remember my basketball preseason conditioning at Taylor University where we thought we would collapse. That is one advantage of sports participation as it helps you learn what you what you are made of.
After the chemotherapy I will receive the new bone marrow cells courtesy of my brother. He will have them harvested from his blood for me to replace my sick cells.

I was sent the informed consent forms today and even though I know better, became very discouraged reading all the serious health risks that could occur. Some are life threatening. Quite sobering when you read them all, no matter how remote a chance. I am reminded of Psalm 23 - although I walk through the shadow of death I will fear no evil. I remember someone speaking that it is a shadow, not true death for the believer. Shadows in our lives are scary aren't they. Not knowing the future can be unnerving. After all, who wants to have the flu for 2 weeks or have other complications by choice. But God is faithful even when our faith is shaky.

I woke up at 2 p.m. thinking how our sin is like a cancer to our soul. It is terminal without God's intervention via Jesus. With my cancer,I must have faith in the doctors and treatment to cure me. It is not 100% certain but the odds are very good. When it comes to sin it must all be cured and the guarantee is 100% with Jesus. The key is you have to understand you are sick with sin and admit it. Then you need to ask for treatment. God doesn't force it on you.

Big milestones are 30 days as this is the highest chance for virus attack. The second is 100 days where there can be rejection. We covet your prayers as we travel this journey before us. Please pray for superhuman strength for Trish to carry the load of being both parents and at the office. Pray for uneventful healing; for the team that will care for me and that our witness will be attractive.

Blessings,
Neal

Book by its cover?

2011-01-08T15:39:00.002-05:00

So great to be home! I am gradually getting back to strength here. No day is the same as my need for sleep fluctuates as well as my sleep patterns. Great excuse to take a nap anytime. Feel free to use it yourself. I have even written a talk at 2 a.m. as my eyes popped open for a couple of hours.

As I go through treatment, I hope to always share my faith and hope with those I come in contact. I have been reading Heaven by Randy Alcorn. It gives great insights into what the Bible speaks to about heaven. You should read it. While waiting for my appointment and during, both a nurse and the director of the transplant program engaged me in conversation about the book. They asked interesting questions and were open that I believed we all will go to heaven or hell when they die. I didn't go into great theology but noticed openness and inquiry. I think I will carry the book around even when I finish it as it does provoke discussion. I might even put the book cover on other books as I read them. :)
It is also unique as I have specific cravings - like being pregnant. It is mostly for protein and carbs. Not for ice cream or sugar snacks. Chips and dip come up frequently. Plus my cholesterol is down within normal limits so I don't have concerns. I can use the cancer card to eat anything I want!

My brother is a match and a go for the transplant. They are optimistic with comments there can be some side effects/risks but I am young (hey, I like that) and healthy.

We are thankful for God's protection for as we came home we avoided a sideswipe of a semi on the entrance ramp of the skyway. In a loaner car as well. All is well when it could have been bad.

Keep your cards and letters coming in! Feel free to comment.

Back Home!

2011-01-01T19:48:00.006-05:00

We got back from the University of Chicago hospital yesterday afternoon. I drove this time so it would be easier for me to get the Yoon's house at night. We purchased parking coupons so it is only $5 a day as opposed to $13-$25 a day. Neal did pretty well getting his chemo. He did some throwing up, especially Thursday and was very drained physically. I told him that this was normal; it's just that he managed to not have side effects for the past 7 months. His hemoglobin is down which is part of the reason for his fatigue. He went to our local hospital today to get a neulasta shot to help raise his white count so hopefully he will start to feel better in a couple days.

Karl is the winner of the donor contest! Both were matches but since Joan has been pregnant (pregnancy does something to the proteins)a male is preferred. He will need to undergo tests at the U of C. Neal also will get a PET scan in 3 weeks and need to meet with the transplant doctor. So, the transplant will take place sometime in February. We meet with Neal's doctor next Thursday. She will give us a time table. I am learning to take one day at a time and not stress about the future, like where to stay.

As I reflect about 2010's New Years I was still undergoing radiation. I thought we would have a "healthy" 2010. God had something else in mind, a constent reminder that He is in control. What will 2011 hold??? One thing I am sure of, God is directing our paths and His ways are best. So whatever happens He will be with us through it all.

Happy 2011!

On the journey,
Trish

PS Thanks to the Spaulding's for the puzzle. It was the perfect size to do on the table!

PSS I couldn't resist showing off our two little reindeer: Lane and Eli :)

Round #2

2010-12-26T21:05:00.002-05:00

Tomorrow morning we head back to Univeristy of Chicago for 4 more days of chemo. Neal managed to keep most of his hair for Christmas. If you pull on it it falls out so we shaved most of it off this afternoon. Neal has his new slippers packed,a puzzle from one of the kids in our community group and movies from our staff. :)

We had a great Christmas with our kids and two wonderful grandsons! The kids gave us a poster of various family pictures for Neal to hang in his hospital room. The birth of Jesus and his story is the hope, strength, comfort and peace we hold on to as we journey down this path.

Karsten is home from college so he and Collin are taking down the Christmas tree at the office tomorrow. Tuesday they will take a road trip to my sister's house near Chicago for a couple days and visit us in the hospital.

I will be staying with the Yoons again this week. I am still working on arrangments for both Collin and I when Neal goes back to the hospital Jan. 17 for a few weeks. God will provide! I guess I have a few things on my mind because I went to Walgreens this afternoon to pick up some perscriptions and left my purse in the shopping cart. I didn't realize it until Walgreens called me later to tell me! Thankfully everything was still in it.

I'll check in this week. Pray that Neal handles this chemo well with little side effects.

On the journey,
Trish

Back home to my own bed

2010-12-11T15:19:00.002-05:00

Thanks to everyone for your prayers! It is great to be home and feeling quite well!!
After getting up every 2 to 3 hours to use the bathroom (with IV pole in tow), due to lots of I.V. fluids, it was good to sleep for several hours. It is a bit like when we had babies - neither can be ignored for long without ending up with a wet bed - haha
The last day was the most difficult as the bed started to get hard, fatigue setting in. The Yoon's were so helpful and the staff supportive, but it still isn't home.
I feel quite well as Trish and I again walked a couple miles this a.m. I can see fatigue setting in at times - like when the trash needs to go out, or ....... Actually, isn't it interested how we don't mind doing work after we have been unable?

Some very promising news! (Insert Praise to God here with your favorite phrase) For my marrow graft they try to get marrow from a sibling first. Normally the match odds are 1 in 4 (1:4) that a sibling will match. The director told us that after initial tests both Karl and Joan are 99%likely matches. That is 2 in 2 (2:2)!!
I told my oncologist Dr. Smith it was a God Thing. She looked at me and agreed but I perceived it as an intellectual acknowledgment vs. a spiritual agreement. That will be God's work and just think - I get to help!

You won't see me in large gatherings as I limit my exposure during cold and flu season to those who could be ill and not know it so I will try to stay in touch this way. Or you can call, e mail etc.

Thanks to all who have offered meals or should - you can find my favorites at Neal'sfavoritefoods.com -- just kidding!
I was told my hair will be lost in 10-14 days so is it Mr. Clean or Yul Brenner? Maybe Mr. Staypuff Marshmallow? Mr. Universe?

I find this is not only a physical challenge, but also mental. Growth will happen and I pray it is what God wants to shape in me.
We welcome comments to our blog. Share encouragement to those in your life who need a word.
Blessings,
Neal

My host family

2010-12-11T13:44:00.006-05:00

John and Mary Yoon, daughters: Mary, age 5, Eva, age 3, and Emma Grace, 3 months

The Yoon's have been a wonderful blessing to us during my stay with them this week. They made me wonderful breakfasts, John would walk me to the hospital in the morning, show me short cuts through buildings, taught me how to use the Metra train, pick me up at the hospital at night,and bring us food. They love the Lord and are a good example of showing God's love to others. They have invited me back to stay with them when Neal returns for his 2nd round of chemo starting Dec 27. This is a huge blessing to have my next accomodations taken care of. The doctor told us this week she recommended us renting a place to stay for a few weeks once Neal starts his stem cell transplant (which will be mid January). He needs to be monitored closely for the first 100 days which requires frequent doctors visit after his discharge (his hospital stay will be 3-6 weeks after his transplant begins). The Univeristy provides a list of hotels at a discounted rate (lowest $90@night) but there is not a place like a Ronald McDonald house. John Yoon has shown me a site of students and professors renting their places for winter term (Jan-March) because they are studying abroad. We have another couple of possibilities as well. It's a big undertaking to basically relocate for 3 months. Accomodations for Collin also need to be made.
Please join us in praying that accomodations can be found easily for us in Chicago and Collin in Bridgman.

On the journey,
Trish

2010-12-08T14:21:00.002-05:00

Neal is still great--no side effects so far! He is keeping the staff in stitches with his joking! The hospital food is getting old but my host family has been blessing us by sending a goody bag every day. The social worker came to day to interview Neal to make sure he was worthy of the insurance paying for his transplant. He passed!

Thanks for your prayers.

Trish

Testing, testing - is this on?

2010-12-07T21:20:00.003-05:00

Hi everyone,
Great day as so far I have no side effects so far!!!!! It has been quite a bit of testing for heart (caring of course), lungs (full of hot air?), and then blood pressure every 4 hours while sleeping. Fortunately I have the Smith gift of sleep which means I can fall asleep quickly and almost anywhere. Grandad Dale passed it down to me and me to my children. Ask my daughters in law Michelle and Jenni.
Even grandson Eli at 10 weeks now has it to sleep 8-9 hours. Attaboy.

Trish had a follow up exam at Northwestern U. hospital and then off to shopping on Michigan ave. She was able to get her exercise in. I was able to find a long corridor where I could walk with my double IV stand. It is 630 feet so I can walk some miles plus it has little traffic.

We have been blessed to have Trish staying locally with a Christian Medical and Dental Association physician and his family. He is an internal medicine hospitalist (he is a patients doctor who works only here in the office instead of a private office) right here at the hospital with an office on the same floor as us. They live a 10 minute walk from the hospital. He and his wife are very considerate, going out of their way to help. We thank God for them. God supplies our needs again as always.

We continue to look for opportunities to be light with those we meet daily. There is great sadness and distress here with families. Who is their hope? Jesus is the only answer to our needs. Thank you for your continued prayers as we are on our journey with praise for feeling so great today. One day at a time, thanking God for the day he has given us.
Neal

All settled at U of Chicago

2010-12-06T19:30:00.002-05:00

We arrived at the Univeristy of Chicago around 1:00 today. Neal has had many tubes of blood taken and will start his chemo around 8:30 tonight. The chemo will take 48 hours to administer. I have already finished bringing Karsten's scrapbook up-to-date as I wait with Neal!

Trish

Round 2

2010-12-03T22:00:00.002-05:00

Well, Monday begins round 2 of my Lymphoma treatment. Trish and I have been discussing that God must need us at the U of Chicago hospital to share our lives and faith. Who will he put us in front of?
My biospy came back that with good but not the best results. The original tumor had shrunk from the size of an orange to the size of a small walnut. The problem is the cells remaining were resistant to the first type of chemotherapy. That means more aggressive therapy starting with chemotherapy for a couple rounds this month where I stay in isolated clean rooms to avoid bugs as my immune system will be waaaaay down. I can hang out in the room and even use exercise equipment, laptop, and all, but stay isloated except for Trish and the staff.
In January I will then have a bone marrow transplant. Why you ask? Because Non Hodgkin's is a blood cancer that has some defective bone marrow B cells. The new bone marrow then creates white blood cells that kill the bad blood cells. At this appointment my immune system will be zero as the bad cells are destroyed and I get the good ones by an I.V. This requires a stay of 3-4 weeks.

Did you know half of bacteria in the body (700 types) live in the mouth. The doctors say if I had a desk job, work wouldn't be a problem but since my immune system is low, I can't be exposed to other's mouth bacteria which happens as a dentist. That means I will be on vacation for several weeks until my immune system is back up to health. Fortunately I am blessed with a great group of people, including Dr. Ryan Thomas, for continuity of care for our patients.

We have been blessed by Trish being able to stay near the hospital with a resident physician who is a Christian Medical and Dental Association member - a fellow believer who has opened his apartment to Trish so she is only a 10 minute walk away. Thank you to so many of our friends who help keep things running including getting Collin where he belongs.

We appreciate your prayers and support. This is serious stuff but have confidence that God is in charge.
I had a chance to speak on our storm at Storyline church - www.Storylinechurch.com - on Nov. 21. You can listen online if you like. God has been faithful throughout our lives and know He always is even when we falter. It is a hard road with many lessons to learn and Him to be glorified. We all go through storms.

Blessings to all,
Neal

Biopsy - a cut above!

2010-11-06T11:21:00.002-04:00

Well, the biopsy went very well. Moving a bit slower but very comfortable. The surgeon was able to remove the remaining tumor entirely for biopsy. It will be checked to see what type of cells are living there. It was an unexpected physcological lift to have it all removed even though the lymphoma cells are still circulating.
It is great when you surgeon, anesthesiologist, nurse pray with you before heading into surgery.

I was led on Wed. to Psalm 103
The first two verses are part of an old hymn.

Bless the Lord, all my soul, and all that is within me, bless His holy name
Bless the Lord, all my soul, and forget not all His benefits
Who forgives all your sins and heals all your diseases.......

Interesting promises to read two days before surgery.

Thanks for your words of encouragement, words of prayer, and sharing our journey.
Neal

Surgery Date

2010-10-28T21:02:00.002-04:00

Neal met with the surgeon last night and his biopsy is scheduled for Nov. 5. So it looks like it will be about 3 weeks until we have answers. Ughhhh. The waiting is so hard.

On the journey,
Trish

Update from the U of Chicago

2010-10-25T18:44:00.002-04:00

After a very helpful visit today that gave us more information except we don't know what treatment route we will go with yet because the physicians are certain what remains. Is it inflammation or still lymphoma - if so what kind.
So the next step is a biopsy. Conveniently I still have small scars from the first so they can just cut on the dotted line :)
That should happen soon and then we anticipate another visit to U of C a couple of weeks after the biopsy.
It was disappointing for both of us to hear the news it still remains - but thankfully much smaller. As I reflect on Mark 4, I will be speaking on our experience hopefully soon in church about our storm. One lesson I learn from the passage of Jesus calming the storm is that these experienced fishermen were terrified of being swamped as wave after wave surged over the boat. Over the last 3 years we have been in our own storm as waves continue.
Our great hope is that Jesus is in our boat and is in charge of all as he says "Quiet, Be still" to all the waves threatening these disciples. God is in control and the sooner we ask him to take over the better.
Read the account with the response of the disciples. When they called on Jesus, what did they want him to do? Bail, row? He did a miracle that none of them even could conceive. We know our God can do the same. It is up to us to trust that he knows the best answer for our storm.

God is good, all the time
Neal