It's Not the Water

KU Med called me and said that I will not be doing a bone marrow transplant (BMT) this month because one of the latest test shows that recently the number myeloma cells in my marrow have increased. He said I have a "resistant myeloma". The kidneys were a clue and it would just be a matter of time before the other numbers rose as well. Velda and I praised the Lord loudly when we found out. I am switching to a new chemotherapy that he described as "new" and is used for resistant myeloma (my third type chemo in case you lost count). My lab tomorrow has been cancelled. I will have 2 rounds of this chemotherapy which will be done here in Salina. So where do we go from here? Continue to pray, glory and count it all joy. As for me, after I blog I will change the oil on the car, do what I can to help the crew build my fence and prepare to plant black-eyed peas tomorrow.

P.S. I still will keep the fluids going as well as the prune juice which has caused me to burden the water purification plant in Salina a little more than I have in the past.

All Good Except . . .

Velda and I are in Kansas City and just got our test results. Boy was that fast. The last time we had to wait a week. Velda and I prayed together this morning (as many of you did as well) that the doctors would pick the best day and that the numbers would look enough to proceed at this time. The verdict is inconclusive at the moment. All the indicators were good except the kidneys. Velda and I were dumbfounded because the kidneys had looked the best while everything else was playing catch-up. As recently as May 7 the kidney indicator was well within the range to proceed with a bone marrow transplant (BMT).Upon further investigation it became evident that I had not fulfilled my part of the bargain. I am supposed to keep myself hydrated to the tune of 3 quarts of water a day to keep the chemicals moving through me and to ease the load on my kidneys. I have a routine to help me but that routine has been broken for over a week and I probably have only been getting 1 quart a day. So I have to retest in Salina this Friday with strict orders to hydrate appropriately. Overall Velda and I were quite encouraged by the report and feel the kidneys should align themselves by this Friday. Thank you for praying. God is working.

All Good Except . . .

Velda and I are in Kansas City and just got our test results. Boy was that fast. The last time we had to wait a week. Velda and I prayed together this morning (as many of you did as well) that the doctors would pick the best day and that the numbers would look enough to proceed at this time. The verdict is inconclusive at the moment. All the indicators were good except the kidneys. Velda and I were dumbfounded because the kidneys had looked the best while everything else was playing catch-up. As recently as May 7 the kidney indicator was well within the range to proceed with a bone marrow transplant (BMT).Upon further investigation it became evident that I had not fulfilled my part of the bargain. I am supposed to keep myself hydrated to the tune of 3 quarts of water a day to keep the chemicals moving through me and to ease the load on my kidneys. I have a routine to help me but that routine has been broken for over a week and I probably have only been getting 1 quart a day. So I have to retest in Salina this Friday with strict orders to hydrate appropriately. Overall Velda and I were quite encouraged by the report and feel the kidneys should align themselves by this Friday. Thank you for praying. God is working.

Here We Go Again

On May 7th I met with my oncologist/hematologist here in Salina and had some mixed reviews. The strength of my cancer has been reduced by 80%. The optimum level for a bone marrow transplant (BMT) is 100% or in other words, there is no evidence of the cancer. That level is not always achieved so there is a "tolerance level" that can be reached that will allow the BMT to be performed. On May 20 Velda and I will be travelling to Kansas City. I will go through the same battery of tests that I did in April to see if the cancer has been reduced enough to proceed. From my perspective, it would be great to proceed at that time because I would have the whole summer to rehabilitate and would have a strong chance of being ready the first day of school in August. Here is how to pray.

• Wisdom for the doctors in determining the best time to do the BMT regardless of my schedule.
• On May 20th I will be at the optimum level for a BMT.

We have received around $80,000! That is $10,000 over what we needed to perform the BMT. The original estimate of the BMT was based on smooth sailing, no glitches. Not getting the BMT in April was a small glitch. The two extra rounds of chemo since April and the second set of tests to come are costs not figured into the original estimate so we're digging into the extra $10,000 already. We believe that God will all of our need according to His riches in glory by Christ Jesus. (Philippians 4:19) We also acknowledge that part of God's formula for meeting our needs is living a godly life and being content with the necessities. (I Timothy 6:6-8) Another way God meets our need is by responding to appropriate requests. James 4:4b-5a says " . . . yet ye have not, because ye ask not. Ye ask, and receive not because ye ask amiss  . . ." So we are continuing to ask and would like you too as well. Here is what you can possibly say.

• That God would bring in the exact amount that we need (He knows even though we don't)

Thank you for all the financial gifts and especially for praying.

Tentative plans

I don't have any test results to report. The weekly labs have been scaled down to only record complete blood count (CBC). My hemoglobin has been drifting down which explains why my energy is waning. I received an email from KU Med asking if a bone marrow transplant (BMT) on June 19 would fit into my schedule. I told them that I would like to do a BMT on a day where the indicators show that I would get the most optimal results. As far as my schedule I said that school is over for me May 17 and that I would like the BMT as soon as possible afterwards so as to be ready for the start of school the second week of August. Please pray that the optimal date will coincide with a date the third week of May. Thank you.

Running Over

$70,184.68! Jesus said in Luke 6:38 says ". . . pressed down, and shaken together, and running over . . ." with respect about how God can bless. We are experiencing it! It is time for a confession. I have been a hypocrite with regards to this fundraiser. I have put on a bold face but had a very dim hope of reaching the goal in my heart. The amount of the Benefit Dinner blew me away. Still I figured that I would not get much more (Oh me of little faith). In the 10 days since the benefit dinner there has been an average of around $2,000 a day being given to my need! If you go to the HelpHOPELive  (HHL) site the thermometer will show less than 100% because some money was given directly to and for us. At first I chafed a little thinking "Don't these people know the procedure", but you and God knew better. HHL will take 1-2 weeks to get the money to us after I apply and Christian Healthcare Ministries (CHM) takes 60-90 days. So having some money that can be accessed very quickly seems quite wise now. HHL has received $63,904.68. We have received $6,280. Please don't accuse me of a bait and switch con game but I am going to raise the goal. KU Med advised us to raise more than than the amount they quoted to us. Because of my level of faith at the time I set a goal that covers only the procedure. There will be other costs. The amount raised covers a routine procedure without a hitch. If for some reason a specialist is called in, it will raise the amount needed (specialists are not cheap). This also doesn't cover transportation, follow appointments in Salina and Kansas City, the work being done in Salina now with my weekly labs, some prescriptions, monthly doctor visits nor any unforeseen costs. For instance I am supplementing my treatment with an alternative protocol called CeMe. KU Med encouraged us to supplement what they were doing. This product was recommended to us by a trusted friend. It is being clinically tested in Atlanta and getting very good results. There is no information online because nothing will be made public until there is a significant body of data so as not to give anyone false hopes this early in the trials. If you call them they are quite willing to tell you what is happening thus far with a strict caveat that at this point they don't know what all it can do and there are no guarantees that it will work for you. It takes about 90 days to take full effect and its main function is to boost the immune system and supply energy. Those are my two main needs after the bone marrow transplant (BMT). We have decided to try a double dose for the first 90 days at their recommendation ($2,000/90 days) and then possibly change to a maintenance level after that ($1,000/90days). One person who had myeloma in the trials was declared "cured" after using this protocol. This is significant because right now the medical community considers myeloma as treatable but not curable. Anyway, now that the BMT is covered, I have no idea the amount to which I should reset as a goal. This is my first time on this (hopefully my last) so I am shooting in the dark. For now I will reset the thermometer to $75,000. If we pass that amount, I will reset it again. In Matthew 17:14-21 Jesus says ". . . If ye have faith as a grain of a mustard seed, ye shall say unto this mountain, Remove hence to yonder place: and it shall be remove . . ." It is comforting to know that the size of my faith is not the issue but the size of my God. Small faith in a great God brings great results. We are seeing mountains move!

Praise God for His work through all who have prayed and given.

Pray for (in order of importance):
Wisdom as we are continually faced with decisions that are pretty foreign to anything that we have faced in our live thus far

Complete healing

God to pick a perfect date for the BMT to be done (if needed)

Our patience as the perfect date is determined

God to make a perfect match with our resources raised and the future (unknown) needs

Thank you

The Benefits Continue

Over $60,000! I wonder if I will cease to be amazed. There has been over $9,000 received at the HopeHelpLive website in addition to more that has been given directly to us this week! (How many exclamation marks can I use!) Add that to over $50,000 received at the Benefit Dinner and it starting to become mind boggling! I had a lab this week but it was only one test. My hemoglobin is slowly drifting down which is not good but it is still in a range that allows me to function pretty close to normal. Thank you for praying and contributing.

Thank You

$50,000! Wow! We are so very thankful to everyone who supported us today. That is an amazing amount and it humbles me to think of what that means. I shared with a few people today that when I was in my teens I would wonder what people would say about me when I died. I feel like I'm hearing those type of things way ahead of schedule. As far as the medical side, I have 2 more rounds of chemotherapy scheduled. The doctors are simply waiting for the numbers to get into to the correct range before performing a bone marrow transplant. When I was in Kansas City in late March the chemotherapy was stopped which caused my numbers to plateau. I expect them to go down again now that I have started again. Again many thanks to the support that was showed to me and an special thanks to the organizers and workers of the event. We are getting to see God in action through His people.

Hurry Up and Wait

I am not going to Kansas City this week and you can throw out the schedule from the last blog as well. Talk about an emotional roller coaster again. I was informed after school today that the numbers were  not good enough to do a bone marrow transplant (BMT) at this time. There were things to which that I was not looking forward (5 hours in a relatively motionless in a recliner  level 10 chemotherapy) but I had mentally prepared myself to do. It was a disappointment to not go. While walking to the Salina cancer clinic Velda let me know that there were quite a few benefits for having it postponed. Thank God for Velda. My oncologist explained that at the beginning of my chemotherapy the original drugs were not working and we switched mid-stream. He said he is not surprised because it was like starting a month later than my actual time of beginning chemotherapy. It has been decided that I will receive at least one more round of chemotherapy which will keep me here through early May. At that time another evaluation will be made of my progress and the BMT will be rescheduled. I should fulfill most if not all of my school responsibilities not to mention being able to see my daughter Grace's vocal concert. My emotions are still swirling around a bit as I write this blog but it is starting to settle into a fairly positive attitude. My oncologist also said that  there is a lot to be positive about my numbers and he's especially glad to see the numbers pertaining to my kidneys. He didn't get to specific but spoke in general terms. I will be updating you as I go back to the routine of weekly labs and chemotherapy (and prune juice for that matter). I am especially thankful for everyday that I open my eyes in the  morning and get out of bed. Thank you for praying.

Back Home

It is good to be back home. We had a nice time getting around Kansas City. I am sure we won't make as many wrong turns next time. The Hope Lodge was full so we were put in the Drury Inn in Merriam KS which was very nice. Velda didn't have to cook while we were there because it provided a complimentary hot/cold breakfast as well as dinner each night. While In Kansas City we visited the Arabia museum on a recommendation of a friend and were amazed at all the pre-Civil War artifacts recovered from a sunken river boat. Anyway, I had some tests and x-rays along with quite a few orientation meetings regarding the bone marrow transplant (BMT). We have no results yet but were told if the cancer is at least in 50% remission then the BMT will be scheduled. My transplant coordinator has set up the following schedule. Some parts of this schedule are tentative.

April 4 - Consent meeting and neupogen* shot
April 5 - Neupogen shot
April 6 - Neupogen shot
April 7 - Neupogen shot
April 8 - Stem cell collection (7.5 million minimum needed, return to Salina when sufficient number is collected)
April 9 - Stem cell collection (if needed)
April 10 - Stem cell collection (if needed)
April 15 - Melphalan chemotherapy (on a scale of 1-10, 10 being the most potent chemotherapy, this is a 10)
April 16 - Melphalan chemotherapy
April 17 - BMT (my stem cells are put back in my body and they begin the process of rebuilding my bone marrow)
April 18 - Monitor my blood levels, check for infections and rehabilitate in Kansas City
May 6 to 15 - When my blood levels look good, I will return to Salina to continue rehabilitation with stringent restrictions on diet and activities
July 24 - If all goes well, all restrictions will be lifted as far as my diet and activities. (Two days before my birthday!)

We will give you specific details and prayer points as each event approaches but this gives you an overview of the days to come. Thank you for praying

*Neupogen is the hormone given to me that makes the body overproduce stem cells. The body will push the extra stem cells into the blood stream where they can be harvested.