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Friday, December 22, 2006 5:36 AM CST
Last night in the hospital. Transfusions are all over. Two down, eight to go. Now I just have to wait to feel better. Before that happens, it's just one more sleepless night in the hospital... what is this doing to my brain?
I've been called a lot of things since I started treatment. "Hero" "Awesome" "an Inspiration" "Impressive". Everyone knows I have a huge pain tolerance. I just don't like to complain. I'm not going to lie though--it's hard being sick all the time. All I want to do is go back to work, go to school, have a normal life. That seems so distant now. So why didn't I get a normal life? Why did I have to be a "hero"? Always wonder just what it is that I'm doing that makes me a hero anyway. Just because I'm bearing all the pain? Or is it because I keep surviving? I don't think anyone enters the battlefield assuming they are going to be the one still standing at the end of the day. And what about all my fallen comrades? Does anyone know how guilty it can make you feel?
Cancer doesn't just mess with your health--it changes your whole mindset. Suddenly all the goals and ambitions of everyone living out the "American Dream" seem so pointless because this close to the edge, you know exactly how much good it's going to do you once you are gone. You can't help but want them, like everyone else does--that's what society trains you to think. But what I really want is something that will not go away no matter what. I can't describe how much it helps me to know that so many people care about me and pray for me. It's something I think about all the time. Human relations are so much more valuable than anything material.
Cancer can do two things to you: make you stronger or make you insane. I believe I've tasted both. But if God did this for a purpose, it's going to be pointless if I don't figure out a way to make the experience useful. I can tell you it has already made me a more compassionate person. It means so much to be able to help someone out--to give back for everything that's been given to me. Even the little things that mean so much... like having a good friend to talk to late at night when you really needed it. It’s not that hard to completely brighten someone’s day.
Thanks for reading this, and pray that I get more chances to help others, because that’s what I really want.
~Erik
Wednesday, December 20, 2006 4:24 PM CST
Thursday morning update!Thank you for praying! His bilirubin was 2.6 this morning So he will get the third dose! Praise God!
**********************
No preaching today--just Hospital News Flash:
Please pray for LOW BILIRUBIN TONIGHT AND TOMORROW MORNING.
Erik is getting antibody at half dose, and the bilirubin jumped to 1.7 after one dose. Last time it jumped to 1.9 after the first dose, so looks like he is going down a similar path. His bilirubin jumped to 4.0 after the second dose last time, and we want it to be below 3.9 tomorrow.
THIS IS HUGE: please pray his bilirubin is 3.8 or less tomorrow morning.
If it is 3.9, he cannot get he third dose, again. This also means if he is to continue on this drug, he'll have the dose halved AGAIN, so the next round would be at 25 percent dose (that is providing they see a response and the disease is stable or shrinking).
This is very frustrating because this treatment is EXTREMELY tolerable compared to everything he has ever had to treat cancer. He has had minimal side effects and everyone here is AMAZED at how well he has done! SO PLEASE PRAY HIS BILIRUBIN WILL STAY LOW!!!!!!!
Otherwise, this round is going exceedingly well. Erik has been feeling really well, a bit of chills the first day, no fever, no pain. His lips are a tiny bit swollen, and he is retaining fluid again, but no problems with lungs. He has been eating GREAT, sleeping well, and up and around more than last time. We are in the computer room together right now.
He was admitted on Monday, and on Tuesday during the infusion the Walz family (minus Thomas and Howard) came to visit! I'll try to post the photo as soon as I remember how to do it! Nathan, Katie, Brian and Erik all played a new game they brought him called Blokus, and Pam and I had a cup of tea int he family lounge. Talking to Pam is such a blessing. She is a good therapist, and the price is right! She and I discussed all of life's problems, and she wisely solved each one. Life is hard, but the answer is always love. Thanks Pam! Nathan looks great and it was such a treat for Erik to see them again. What an incredible family!
Erik had a super nice room mate named Josh (22) who DROVE himself from Duluth for his week of chemo (oseteosarcoma), and DROVE himself home after he was done. Unbelieveable tough guy. Pray for him!
We are also praying for a tiny baby Michael who has three serious heart defects in ICU. He needs to go to U of Michigan for a very complicated and risky surgery soon. He has pneumonia and a collapsed lung, and is only 7 months old. He has a 2 year old sister and 4 year old brother, and they are such a beautiful and precious family!
There is another boy Shawn who has had a kidney transplant, and got lymphoma, and now had the transplanted kidney removed (in ICU also). He will be on dialysis until they can find another kidney for him, and he is only 6 years old. Please pray for him too!
Erik had a great chat with the chaplain, and had his favorite nurse today Jimbo--a very cool guy (one-on-one nursing for antibodies). So it has been a good day!!!
Blessings to you!
Sunday, December 17, 2006 9:45 AM CST Death of a Vision - Not by our strength or power but by His Spirit
Saturday, December 9, 2006 12:49 AM CST Work, work, work.
Thursday, November 30, 2006 5:36 PM CST Time flies when Erik feels better! He is back at his apartment, feeling great, and composing music and doing creative graphic arts with photos! If he could only get paid to do photoshop and graphic arts, he’d be one happy camper!
Saturday, November 25, 2006 9:34 AM CST Thanksgiving proved to be a VERY special day for Erik since Steve and Libby came to see him! They were diagnosed three weeks apart, both NDSU students. They have both had a long road since then (April and May 2005). Steve spent 4 months at one time (traction, chemo, and surgery) and many more stays for chemo on this hospital floor. Libby, Steve, and Erik toured the new “Adopt a Rooms” and they are incredible. It is hard to try to imagine how Steve and Libby felt about these amazing high-tech rooms, since they spent so many long months in typical hospital rooms. I will post more photos of these new rooms when I get home.
Thursday, November 23, 2006 3:23 PM CST Happy Thanksgiving!
Thursday, November 23, 2006 3:23 PM CST Happy Thanksgiving! Wednesday, November 22, 2006 9:32 PM CST If it is possible to believe today even went better than yesterday! The doctors came in to see Erik four times today and everyone was amazed to see how well he was doing. Praise God! Tuesday, November 21, 2006 10:30 PM CST Thanks to our prayer warriors who teamed up to pray Erik through his first day of antibodies-- it went perfect! God is so Good! Erik had no symptoms at all until a half hour after the infusion ended. He was a bit itchy so he had benedryl, then the chills (rigors) easily handled by demerol and then came the fever. Even though we know IL 2 causes fever they automatically treat with antibiotics for gram positive and negative bacteria until cultures come back negative. After all the meds Erik was down for the count! Out cold for 4 hours!
Tuesday, November 21, 2006 10:30 PM CST Thanks to our prayer warriors who teamed up to pray Erik through his first day of antibodies-- it went perfect! God is so Good! Erik had no symptoms at all until a half hour after the infusion ended. He was a bit itchy so he had benedryl, then the chills (rigors) easily handled by demerol and then came the fever. Even though we know IL 2 causes fever they automatically treat with antibiotics for gram positive and negative bacteria until cultures come back negative. After all the meds Erik was down for the count! Out cold for 4 hours! Thursday, November 16, 2006 8:54 PM CST We have a plan.
Monday, November 13, 2006 3:39 PM CST Next steps? Saturday, November 11, 2006 9:15 AM CST After finishing his tests on Friday (yesterday), we got a call to come back in right away.
Monday, November 6, 2006 8:15 AM CST It is time for Erik's one-year post-BMT tests! Monday, October 23, 2006 9:14 AM CDT Update from Mom:
Friday, October 13, 2006 8:27 AM CDT Hey everybody, this is Erik! Next week (in 2 days actually) I'll be going to Camp Sunshine!!! I didn't think I was going to be able to make it, because of my hours at Best Buy, but my manager, Mindy, is so awesome!!! She thought it would be a really good idea to get out and volunteer.
Tuesday, September 26, 2006 8:42 AM CDT Quick update from MOM:
Thursday, August 24, 2006 10:28 PM CDT Playing Tourists in Minneapolis!
Thursday, July 27, 2006 8:10 AM CDT NEWS FLASH--SAT EVE--JULY 29--ERIK'S BONE MARROW RESULTS FROM BOTH U OF MINNESOTA (PATHOLOGY) AND CHLA (IMMUNOCYTOLOGY) ARE BOTH NEGATIVE FOR NEUROBLASTOMA--PRAISE GOD!!!!!!!
Saturday, July 1, 2006 11:12 AM CDT Update from Mom:
Thursday, June 1, 2006 10:38 AM CDT Hey everybody!!! I have an exciting announcement--Alex's Lemonade Stand (which I'm sure most of you have heard of) will be hosted at the Mall of America Sunday, June 11th! Everyone's invited, and tell all your friends and relatives. The event is sponsored by Hollway Real Estate, and Victoria Dance Productions, Molly's dance studio will put on two special dance performances! It's going to be fun--BE THERE!!!
Friday, May 12, 2006 10:46 AM CDT From Mom:
Saturday, April 29, 2006 12:06 AM CDT WOW—what a week!!!!
Tuesday, April 11, 2006 7:26 PM CDT Mom's update (with permission of course!)
Sunday, March 26, 2006 11:42 PM CST
(I first heard this principle from Bill Gothard's seminar)
God told Abraham he would be the father of many nations, his descendants would be as numerous as the stars, and all nations would be blessed through him. But how could that be? The vision was killed because Sarah was too old, and then again after the miraculous arrival of Isaac, God told him to sacrifice Isaac. God then miraculously brought the fulfillment of that vision by supplying His own sacrifice. Today all eyes of the world rest on His people Israel, who He has miraculously gathered back to the land He promised. And stay tuned--God has much more planned: Thus says the Lord of hosts: In those days ten men from every language of the nations shall grasp the sleeve of a Jewish man, saying, "Let us go with you, for we have heard that God is with you.” Zech 8:23
And in that day it shall be That living waters shall flow from Jerusalem…And the Lord shall be King over all the earth. In that day it shall be-- "The Lord is one,"* And His name one. Zech 14:8-9
Joseph was given a vision that he would be great, that those around him would bow down to him. This vision was destroyed when he was sold into slavery by his brothers, and then again when he was wrongfully cast into prison. God then miraculously fulfilled the vision by raising up Joseph to be second only to Pharaoh, saving everyone from starvation.
Moses was raised in Pharaoh’s palace. If ever there was a Hebrew who could deliver his people from slavery, he was it. But death of a vision came when he killed the Egyptian and had to flee to Midian. For forty years he sat in obscurity with sheep. But God miraculously fulfilled the vision of deliverance, and it wasn’t a result of Moses’ position and strength.
The Jews waited 1000 years for a king to follow David who would be the greatest king ever, and who would permanently take care of the oppression problem. Jesus was that king. But He was crucified. And all of His friends followed Him to the death.
God miraculously fulfilled the vision of a King and Savior who would permanently solve our oppression problems. He raised up Jesus from the dead. He did it BY HIS SPIRIT! Because He has given us the same Spirit, we are no longer slaves to sin, no longer prisoners in our own darkness.
What visions do we have that seem to be perishing? Are they visions for our children, for our marriages, for our churches, for our communities, that are being destroyed? Do we have visions for our sons to be raised up men of God, to have fruitful marriages, and to minister powerfully? But death and destruction come. We only lose heart if we forget that God will fulfill these visions miraculously, in His power and strength, not ours.
Did He not say:
"I tell you the truth, unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds." John 12:24
God is in the business of resurrecting dead things. He resurrects dead seeds, dead people, dead faith, dead visions, and dead marriages.
“Not by might nor by power, but by my Spirit,” says the Lord Almighty. Zech 4:6
Please pray for Erik. He’ll be admitted tomorrow for round two of the antibody hu14.18-IL2, and then scanned and biopsied January 9. Please pray for evidence of healing. This indeed requires a miracle, and will be accomplished by God’s resurrection power.
Eat, eat, eat.
Sleep once in a while.
Add in a little exercise, shopping, PhotoShop, and composing music.
Erik has been keeping busy and feeling fairly well. His back and legs were hurting after a couple long days of standing at work. I naturally freaked about that. He remembers the pain in his hips and legs 18 months ago when he first relapsed and his legs and pelvis were loaded with bone tumors. He says the pain is not the same (whew).
He is extremely excited to have a graphics project to work on for an incredibly wonderful person who contacted him last week (thank you thank you thank you)! He is also contemplating tutoring junior high and high school math for a few extra bucks when he is not working.
So he has one more week to work before his next hospital admission (Dec 18). Meanwhile I am trying to get my own ducks in a row before that happens.
Isn’t it all about focus?
(The disciples are in a boat in a storm, and they are terrified because they think they see a ghost walking on the water toward them.)
But immediately Jesus spoke to them, saying, "Take courage, it is I; do not be afraid."
Peter said to Him, "Lord, if it is You, command me to come to You on the water." And He said, "Come!"
And Peter got out of the boat, and walked on the water and came toward Jesus. But seeing the wind, he became frightened, and beginning to sink, he cried out, "Lord, save me!"
Immediately Jesus stretched out His hand and took hold of him, and said to him, "You of little faith, why did you doubt?"
When they got into the boat, the wind stopped. And those who were in the boat worshiped Him, saying, "You are certainly God's Son!"
Matthew 14:22-33
Just like Peter, it is very tempting to look around at the storm. “Good grief, I am standing on water! In a storm! Now I am sinking!!!!!” But if instead I keep my eyes lifted and fixed upon my Savior, I will walk with Him in the impossible places.
Let’s fix our eyes on Jesus, the Author and Perfecter of our faith!
Glory and Honor and Praise to God!
He got out of the hospital Friday night, did a few errands, and we came back to Park Rapids on Saturday evening. He had a stomach ache and nausea on and off from Friday until Tuesday, but felt better yesterday. He called his manager and she couldn’t put him on the schedule until Sunday (that’s bad—he missed a total of three weeks of work with tests, more tests, and then a week in the hospital).
He had counts done in Park Rapids on Monday, and we went back to the cities for his appointment with his oncologist on Tuesday (a horrific drive, left at 5 am, icy rain, and drove through a deluge for two hours, only to be stuck in traffic with everyone else who was late for work…ugh). The appointment went great, however, because all of his labs came back perfectly normal (CBC and metabolic panel). His ALT and alkaline phosphatase are still a bit high, but with the liver damage he sustained in transplant, it is to be expected.
The best news is that Dr Sondel (the PI of the hu14.18-IL2 study Erik is on) said that the ‘half-dose” he is to receive next round is actually the adult dose for the melanoma phase 2 study of the same antibody. He is in a pediatric trial, but right at the age cut-off (pediatric/adult). Children often take higher doses that adults of some drugs such as chemo, and although the phase I study tells what the maximum tolerated dose is, we do not know what the EFFECTIVE dose is (for kids or adults). So this study will hopefully show that this fusion protein is effective at this dose. Several kids (median age 6 years old) had dose reductions on the phase 1 study.
The other best news is that barring any fevers, he does not need to go into the clinic AT ALL until the next admission date, Dec 18! So he is hoping to work as much as possible until then. The rest of us are back home and catching up with school and life until the next admission.
Please pray with me that he tolerates the next dose well (inpatient Dec 18-22), and that healing is confirmed on January 9th when they do scans and biopsies again.
Thank you so much for praying for him. He appreciates the calls, emails, and guestbook posts so much! He really is doing well, and I think that alone is a miracle! In spite of our circumstances God does not change. He is gracious and merciful, and abounding in love toward us. He is perfectly wise. Let us speak rightly of God as Job did:
Then Job answered the LORD and said,
"I know that You can do all things,
And that no purpose of Yours can be thwarted.
'Who is this that hides counsel without knowledge?'
"Therefore I have declared that which I did not understand,
Things too wonderful for me, which I did not know."
'Hear, now, and I will speak; I will ask You, and You instruct me.'
"I have heard of You by the hearing of the ear;
But now my eye sees You;
Therefore I retract,
And I repent in dust and ashes."
Job 42:1-6
Glory to God!
Steve is still unable to use his prosthesis because of the fall which broke his hip (requiring surgery again) last February. Please pray for rapid and complete healing of his hip so he can use his new leg! For updates on Steve (his mom is updating again) see the link at the bottom of this page. Libby and Steve are both back at NDSU and will graduate this spring/summer, and they have plans to be married in July! They are a beautiful, amazing young couple!
After a wonderful visit with them (Libby even taught Erik how to play Cribbage!), unfortunately Erik didn’t have a very good night. He had a fierce headache and we should have tried more pain meds. Headache is a common side effect of the IL2. The fluid retention resolved, and his bilirubin dropped nicely from 4.0 to 2.8 Friday morning, but his headache was so bad they finally gave him 4 mg of morphine. Well, since he had morphine, they did not want him to leave until the morphine wore off (6-8 hours). Thankfully he felt so much better, he ate well and he had fun figuring out how to get the photos from my camera to the palm to put them on the site. They have wireless now so I can update the page right from his room! I also tried to beat his time in sudoku—fat chance that will ever happen. He’s good. He also creamed me in Nine Men’s Morris, a logic game from the middle ages.
I am very pleased how well he is feeling after so many days in bed. They finally let us go at 7 pm, which was too late to try to go back to Park Rapids so we stayed at his apartment. We went to Best Buy last night to see if his manager was there, but she wasn’t. He is hoping to talk to her this morning to see what kind of work schedule she can give him. He also wants to talk to the vocational rehab counselor about starting college again. This gets complicated with the week-long stays in the hospital every month (provided he responds and can continue to get this antibody—a HUGE prayer request). He may be able to do something online.
Turkey, stuffing, and gravy are way at the top of Erik’s favorite foods. When he was a toddler/preschooler we ate frequently at a restaurant called “Harry’s” in California. He would eat the same thing every single time, a huge plate of turkey, stuffing and gravy, and then lay down on the booth bench and go to sleep while Paul and I finished our food. Fast forward to Boston, November 1992: in transplant when he was 7 years old the play therapist asked him to make drawings to help decorate the play room board for Thanksgiving (even though he could not go out of his room to see it because he was in isolation). Perhaps they were expecting pilgrims and Native Americans? Erik was on TPN and had not had any food for six weeks, so he enthusiastically drew pictures of turkey, stuffing, gravy, and even peas. He doesn’t even like peas. It was so cute!
So the point of this story? Last Thanksgiving he was in Transplant AGAIN and feeling really awful since it was early in the game. Brandi’s family came to see them and her mom made all his favorites, but he was able to only have the tiniest taste of it. So before I came for this hospitalization guess what I made to bring him! I had a great stash for him in the hospital family lounge fridge in a zippered labeled container full of tupperware and he finally felt like having some yesterday. Can you believe someone dug through the zippered container and took the tupperware full of turkey and left the stuffing and gravy? I was so disappointed. Similar to how I felt when we discovered someone had spray painted obscenities on our van the night before we found out Erik relapsed. Now we laugh about driving through downtown Minneapolis TWICE (tests, then back again for the bad news) and the looks everyone was giving us. I do feel sad for such people. How do they sleep at night?
Nevertheless, God continues to shower us with His love through you, and so much strength to Erik, it is absolutely incredible. I really believe it is not humanly possible to deal with his trials now in the natural realm. God has clearly given Erik supernatural strength through His Spirit and placed a powerful balm on his heart pain.
It is clearly evident your prayers are sustaining Erik, and that God graciously gives what we ask of Him. Please continue to pray for healing, and for physical, emotional, and spiritual strength. Erik has been transformed and renewed into a man after God’s own heart. His faith has been refined and purified as gold. His ability to love, give, forgive, and have so much compassion for others is from God! “But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law.” Gal 5:22-23
“And do not be conformed to this world, but be transformed by the renewing of your mind, so that you may prove what the will of God is, that which is good and acceptable and perfect.” Rom 12:2
Thank you for your prayers!
Blessings to you,
Donna
Bless the Lord o my soul
And all that is within me bless His holy name!
Bless the Lord o my soul
And forget not all His benefits:
Who forgives all your iniquities,
Who heals all your diseases,
Who redeems your life from destruction,
Who crowns you with lovingkindness and tender mercies,
Who satisfies your mouth with good things,
So that your youth is renewed like the eagle's.
Psalm 103:1-5
What started out amazingly easy in terms of side effects has unfortunately made Erik's liver somewhat angry. Because his bilirubin climbed to 4.0 this morning they decided no more antibody for him this round. They had quite a time tracking down Dr. Sondel and other experts "at Grandma's house" to decide what to do about Erik's angry liver and more antibodies.
So he is just hanging out getting antibiotics and more lasix to rid him of the fluid he has retained and they will check his labs again tomorrow morning to see if he is good to go.
He will return to clinic on Monday and if his liver function tests rapidly return to normal he can come back for a half dose of this antibody the week before Christmas.
God is pleased to show us His power in "impossible" situations such as "incurable" diseases and "hopeless" situations.
What will God do?
Watch and see the Hand of God at work!
He hears our prayers and is our Refuge and Strong Tower.
Ask, seek and Knock.
"If you then, being evil, Know how to give good gifts to your children, how much more will your father who is in heaven give good things to those who ask Him!" Mt 7:11
Blessings upon you!
Donna
Bless the Lord o my soul
And all that is within me bless His holy name!
Bless the Lord o my soul
And forget not all His benefits:
Who forgives all your iniquities,
Who heals all your diseases,
Who redeems your life from destruction,
Who crowns you with lovingkindness and tender mercies,
Who satisfies your mouth with good things,
So that your youth is renewed like the eagle's.
Psalm 103:1-5
What started out amazingly easy in terms of side effects has unfortunately made Erik's liver somewhat angry. Because his bilirubin climbed to 4.0 this morning they decided no more antibody for him this round. They had quite a time tracking down Dr. Sondel and other experts "at Grandma's house" to decide what to do about Erik's angry liver and more antibodies.
So he is just hanging out getting antibiotics and more lasix to rid him of the fluid he has retained and they will check his labs again tomorrow morning to see if he is good to go.
He will return to clinic on Monday and if his liver function tests rapidly return to normal he can come back for a half dose of this antibody the week before Christmas.
God is pleased to show us His power in "impossible" situations such as "incurable" diseases and "hopeless" situations.
What will God do?
Watch and see the Hand of God at work!
He hears our prayers and is our Refuge and Strong Tower.
Ask, seek and Knock.
"If you then, being evil, Know how to give good gifts to your children, how much more will your father who is in heaven give good things to those who ask Him!" Mt 7:11
Blessings upon you!
Donna
Erik has had no pain, fever, chills, or rash and itching. It was a miraculous day of no side effects!
The only item to pray for tomorrow is that Erik's bilirubin will not rise anymore. He is leaking fluid and red cells -- indicated by fluid retention and a drop in hemoglobin--and the liver must break down the red cells thus causing rising bilirubin. The bilirubin doubled from 0.9 to 1.9 So please pray it goes no higher. Erik had serious liver issues with transplant last December.
Good news is that his lungs are perfectly clear with no fluid build up.
I expected that Erik would most likely be asleep all afternoon based on Tuesday's experience. Erik defied my predictions by visiting with Nathan and Pam all afternoon! Pam had some shopping to do also so Erik and Nathan enjoyed video games while I relaxed. What a pleasant visit with these wonderful people! I am so humbled by this family's kindness and generosity to us. Last year Nathan was diagnosed with lymphoma and they spent Thanksgiving going through induction.
They brought EriK a big box of presents and goodies. Nathan still has a year of treatment left for his lymphoma and will graduate from high school after two years of continuous treatment. What an awesome young man, with an equally awesome family!
Several dear families we have come to know and love are spending this holiday in hospitals battling progressive cancer with extremely tough treatments. Please pray for two very special small children: Penelope London and Nathan Gentry, both in New York. They have both endured more than is imaginable in their short lives. Please pray for healing for these precious ones!
Happy Thanksgiving!
He ate great today--he had turkey and gravy for lunch and meatloaf and gravy for supper. His two favorites!
Last night Mary and Molly Hollway came to see Erik and brought him cards and a new blanket Molly and her friends made-he loves it! Molly is a long term survivor of neuroblastoma and Erik helped them with the lemonade stand at the Mall of America.
Tomorrow we have another treat to look forward to- Nathan Walz and his mom Pam are planning a visit! Nathan was diagnosed one year ago yesterday with lymphoma and he is a high school junior. We had a great time with this wonderful family at Camp Sunshine.
Please also remember Anna Getchell in your prayers. Her husband Judge called up Erik over a year ago and offered Erik and Brandi a place to stay through transplant. They became very close. Judge and Anna had been married just one year when she lost Judge to lymphoma, the day before Thanksgiving. This first anniversary of his passing falls on Thanksgiving. Anna is the most incredible person. Please pray for her during this tough time. Next month she is running her THIRD marathon for lymphoma research!
Thank you so much for thinking of Erik this week. God has given him Supernatural Strength! His spirit is strong and he is chomping at the bit to get back to work. He was looking forward to a twelve-hour shift the day after thanksgiving but that is the day he is supposed to be disharged.
We are extremely thankful for you and all of God's blessings in our lives.
Watch what God will do! Nothing is impossible for God. All thanks to Him who is able to do exceedingly abundantly beyond all we ask or think...!
Blessings to you!
Donna
He ate great today--he had turkey and gravy for lunch and meatloaf and gravy for supper. His two favorites!
Last night Mary and Molly Hollway came to see Erik and brought him cards and a new blanket Molly and her friends made-he loves it! Molly is a long term survivor of neuroblastoma and Erik helped them with the lemonade stand at the Mall of America.
Tomorrow we have another treat to look forward to- Nathan Walz and his mom Pam are planning a visit! Nathan was diagnosed one year ago yesterday with lymphoma and he is a high school junior. We had a great time with this wonderful family at Camp Sunshine.
Thank you so much for thinking of Erik this week. .f_God has given him Supernatural Strength! His spirit is strong and he is chomping at the bit to get back to work. He was looking forward to a twelve-hour shift the day after thanksgiving but that is the day he is supposed to be disharged.
We are extremely thankful for you and all of God's blessings in our lives.
Please pray the rest of this round goes as well as today!
Backing up a bit, we spent the weekend praying and being prayed for, mostly. I hoped there would be ample confirmation that the path Erik chose would be the right one. We all feel strongly Erik made the best choice.
His choices (in no particular order) looked something like this:
--low-dose chemo (not likely to work for very long)
--high dose chemo 3F8 in NYC (could work very well)
--some new phase one drugs (efficacy not known)
--phase 2 antibody (hu14.18-IL2) trial he could do here (efficacy not very good on loads of disease)
He chose the hu14.18-IL2 humanized antibody (also called fusion protein) because he would not have to go through high-dose chemo, it is offered here, and hopefully since he is not completely loaded with disease head to toe as he has been twice in the past, there is a possibility it will work. Can’t help but wish we discovered his disease was back sooner. He has several large blobs of tumor in the marrow of his pelvis, femurs, and spine.
We met with Dr Neglia at the U of MN for two hours, and he had spent several additional hours pouring over Erik’s records. I like this guy. He wanted to make sure he recommended the best possible choice. He recommended what Erik had already decided, and I had secretly hoped he would choose as well.
The big advantage of antibodies is that it is a new modality (immunotherapy), and since Erik has had so much chemo and radiation, those options have certainly lost their luster (they didn’t work). Let’s hope antibodies do.
These people are on their toes. Erik signed the consent form Tuesday--he'll be the first here to enter this trial. He had a bone scan on Wednesday (showed a spot on the left side of his head and a spot on his left pelvis).
They told him he would be admitted to start the antibodies on Monday, so he had a few days off, and he wanted to work as many hours as possible in the meantime. I left him at his apartment and drove home, knowing I would be returning on Sunday for a week. As I pulled into Park Rapids, the clinical trial nurse called me (not realizing I was already 200 miles away) telling me to bring him into the hospital the next MORNING for the port placement. He couldn’t be enrolled on the trial UNTIL he had a double port placed. “Okay” I said, and before I got home at 6 pm made plans to leave early to make it back in time to pick him up for the surgery.
So Aron and I left at 5:00 am this morning to pick up Erik for his surgery, it went fine (but he is sore) and we got back to his apartment at 4:00 pm. I made him some soup (he hadn’t eaten since the day before), and his boss called. Tonight is the release at the PS3 (I think?) at midnight, and she (get this) had several people call in SICK. Could Erik work? SURE! He was very excited about working this release. His Richfield store was on the national news (not exactly good press—they posted online that people could preorder this game thing and they actually couldn’t honor the preorders…)
Anyway as I type this he is at work, after a full day at the hospital and surgery. I must be the world’s worst mom. But he was SO excited about this! So I drove him (a stipulation of post-op) to work at 5:30 pm. He is working until 3 am!!!!!! We took photos of the people encamped around the store the past two days. Crazy!
We counted this is the 13th time he has been put out with propofol the past 18 months. I think he’ll be fine if he babies his left arm!
Tomorrow I’ll take Aron back home and come back on Sunday or early Monday morning. These 400 miles round trips are already getting to me...
So what are these antibodies? They are antibodies collected from mice that attack neuroblastoma (specifically an antigen on the surface of the neuroblastoma called GD2). This one is sliced and diced so that mouse parts are replaced with human parts, so the body isn’t as likely to recognize it as foreign. Then as a bonus, an interleukin-2 molecule is attached. IL2 is a substance our bodies produce to fight bacteria and viruses, and it recruits T-cells and NK (natural killer) cells to come destroy the bad guys (in this case tumor cells). In theory this is a great idea.
Dr Sondel (UW-Madison) is the principal investigator. We had the pleasure of meeting him July 2005 at the CNCF conference in Chicago, and were very enthusiastic about his presentation on this antibody. I was hoping Erik could do the antibody instead of another transplant, and Dr Sondel played a big role in the final decision. He is the one who encouraged us to do the transplant since Erik was responding so well to chemo, it had been so long since his first transplant, and the antibody is still considered "experimental" whereas transplant is considered frontline therapy. During these discussions, Erik's bone marrow and bone cleared of tumor, so he could not enter the trial anyway.
Sloan Kettering in NYC has been using a similar idea (all-mouse antibody called 3F8) for 20 years against neuroblastoma. It works pretty well in some kids. The catch is that the body reacts to it, producing antibodies to the antibodies, and thus the body destroys the mouse antibodies before they ever get to the tumor. To prevent this response, they give high-dose chemo to knock the immune system for a loop, and hope the anti-antibodies (called HAMA) won’t be formed for at least 8 rounds of the antibodies.
If Erik responds, he can receive up to 10 rounds of this antibody. If he doesn’t, he’ll be dropped from the trial.
The side effects are nasty. It is “nursing intensive.” The antibody attaches to nerve cells as well, since they express GD2. This causes extreme pain. The IL-2 causes fever, chills, swelling, and sometime capillary leak, respiratory distress, and some have landed in ICU with this some of these issues. He’ll be in the hospital all next week. If all goes well, he’ll be discharged on Friday. He is hoping he can work enough the other three weeks to keep his apartment, job, and possibly even start back to college. Stay tuned.
So now you know what we’ll be doing for thanksgiving! Hope yours is wonderful!
Thanks so much for praying!
Please keep Brandi in your prayers as well!
Blessings,
Donna
Good question.
Please pray for ample confirmation--that the path God reveals to Erik is made straight.
"Trust in the Lord with all your heart,
and lean not on your own understanding.
In all your ways acknowledge HIM
and HE will make your paths straight.
Do not be wise in your own eyes;
fear the Lord and shun evil.
This will bring health to your body
and nourishment to your bones."
BLESS YOU
Donna
The PET scan showed abnormalities and the bone marrow shows significant amounts of tumor.
We drove 200 miles home last night so we could all be together, and try to plan.
This means we have some very difficult decisions to make.
Please pray for us—this just never gets easier.
Love you all,
Donna
UPCOMING TESTS:
Thursday, Nov 9
08:00 - Pet/CT
11:00 - Labs
12:30 - Bone marrow Biopsy
Friday, Nov 10
09:00 - Pulmonary Function Test
10:30 - Echo
12:00 - Chest X-Ray and Dexa Scan
01:00 - EKG
I am so thankful they scheduled everything for two days instead of stretching this out over several days. Erik won't have to miss any work!
Lesa and I are going to a mother-daughter conference, so we get the added bonus of spending a couple days with Erik, and we will be able to take him to the hospital for his tests.
Please pray for good results for every test!!!!
Erik is looking into going back to college starting in January--he is very excited about this--please pray it all works out!
God is soooooo good. He is doing exceedingly abundantly beyond all we ask or think! He is blessing Erik in so many ways. Please continue to pray for Brandi--may God bless her in every realm!!!!
May God's NAME be glorified in all things!!!!!
Blessings to you,
Donna
WOW was Camp Sunshine ever a BLAST!!!!!!!!!!!!
We are completely overwhelmed at the generosity of the sponsors, the incredible volunteer team, the AWESOME Harlan family, the AMAZING Jellystone resort owners Ed and Debbie VanDerMolen who donate facilities for this retreat for kids with cancer and Debbie even volunteers with the 6-8 year olds!!!! WOW!!! Check out www.jellystonewarrens.com if you want to see how incredible this place is!!!! It is a SUPERIOR vacation spot!!!
Paul and I had the pleasure of hanging with the teens all week, and Erik was on the 9-12 tweens team and he also joined us for the teens overnight. It was great. The families were so wonderful, and all the kids really loved Erik! He was the mastermind for the "Whose Line" skit for the celebration show--it was really fun.
Erik had a record-breaking day his first day back at work at Best Buy, but we sure miss him--we had such a great time with him at Camp Sunshine!!!! All the kids who were there last September wished Brandi could have been there too--we missed her so much!!!!
Perservering in prayer for continued healing for all these families, and all our friends fighting cancer--Erik has scans and tests and another bone marrow coming up soon. We'll keep you posted!!!!
Please keep Brandi in your prayers as well!
Blessings to all our dear friends who love us and have prayed for us through this journey!!!!
Donna
Work has been going really good too. It's really fast paced, and you learn so much. I'm also making a lot of friends there. Best Buy tries to keep things as energetic and happy as possible!
Well, to all the people going to camp, see you in a few days! Hope it's not too cold for the skate park...
Erik worked 36 hours last week at Best Buy! He is trying to get a fulltime position. In the meantime he has been promoted to "Rep 2" and 25 cents more per hour. Hooray!
He went to the doctor yesterday because he has some sort of infection on his face that was spreading and got into his eye. He can't remember what the doctor said it was. He was then sent to see an opthamologist and he dialated Erik's eyes and prescribed a cream to put in his eyes.
This took 6 hours total (mostly waiting for the eye doctor).
He and Brandi went shopping for cheap high calorie foods at Sam's afterward. He is keeping a spreadsheet on all he eats and his weight. He is still at 142 but at least it appears he has stopped losing weight. He has been eating about 2000 calories per day and I have finally convinced him to gain he needs more like 3000! He is so funny, he is turning this into a maximum-minumum "game"--what foods have the maximum amount of calories for the least amount of money? He has found some surprising deals this way. I told him calculus paid off! Ha!
He has new hearing aids that are working out great so far. Very subtle behind-the-ear design, and he likes them! He will see his oncologist on the 10th of Oct and also the audiologist for adjustments.
He is off accutane (after 6 months total) and his oncologist is checking into other possibilities for a drug to hopefully keep him in remission. The accutane can be extremely rough on the emotions for teens and adults (he was on 10 times the dose given for acne). Erik couldn't eat well and the dry itchy skin side effects were driving him crazy. He feels MUCH better now.
While we were elated that the aspirate sent to CHLA came back clear, the solid part of the bone marrow examined here did show a small amount of neuroblastoma, we found out later. Please pray that it was differentiated (harmless) and that he remains in remission! That test was two months ago, and he doesn't have it checked again for two more months...
His one-year post stem cell transplant tests are being scheduled for November. He'll have another bone marrow biopsy, PET/CT, pulmonary function test, echocardiogram, and a host of other tests.
Naturally we all want the tests to come back GREAT and hope that he doesn't lose too much time from work to get through the tests schedule. He may not be able to go to Camp Sunshine for this reason (too many weeks lost and he needs fulltime to pay bills!)
By the way, the last bone marrow biopsy was his 11th since relapse last May 2005. He also had many back in 1991-1992 as well. Dr Neglia said it was the hardest bone marrow he has ever done (and he has been at this game a LONG TIME). Since these are becoming so difficult to do, Dr Neglia is hesitant to do them anymore, but it remains the best test for monitoring the disease in Erik's case. Pray that it goes well, and that it is squeaky clean!!!!!!!!!!
Please also pray for Brandi--she has been suffering from stomach pain for more than six months. She has been through such a tremendous amount of stress the past year, please pray for healing for her.
Blessings to you everyday!
Truly our God is merciful and kind. We are very grateful for each day!
Donna
We had the nicest visit with Erik and Brandi this past Sunday through Tuesday. Unfortunately Brandi was in school, but we enjoyed Chinese take out and pizza with her while the kids swam in their apartment pool. Erik was off work and joined us for our tourist outings. We went to Como Zoo, historic Fort Snelling, and Minneapolis Art Institute. We also made a pit stop at UM-Fairview to pick up meds and bagels, and of course the required walk around Mall of America. I also went to Ikea for the first time—now I understand the draw! They had to drag me out!
My mom, sister Dawn, her husband Richard and their son Sean also came. We all stayed at the Minneapolis Air Force facility near the airport—very convenient to Erik and Brandi’s apartment. We had a blast! Erik loved Fort Snelling, and he and Lesa didn’t want to leave even when everyone else was tired and hungry.
Erik is looking and feeling pretty good, but has lost 3 pounds due to c-diff. His weight is a real problem, and not going in the needed direction.
We left town at rush hour and didn’t get to stop at Brandi’s school for haircuts, so we’ll make that a priority next time!
Erik sees Dr Neglia (pediatric oncologist at UM-Fairview) again mid September, and I am hoping he can stretch out the accutane schedule (2 weeks on and 4 weeks off) and perhaps put Erik on an appetite stimulant. The bone density problem is unlikely to get better without taking the fosfamax (has to take it without eating, and sit up for a certain period of time so can’t take it before bed). The pharmacist suggested the once a week variety—so hope he can get switched to that as well.
His counts are great—ANC of 1500 and platelets over 200K!
This is significant since his stem cell transplant used cells that had multiplied from his first bone marrow transplant in 1992. This hasn’t been done very many times. Usually they like to use the extra cells that were stored from before the transplant.
On the home front, Paul is busy with computers to fix, Karl starts back to school at the community college in Detroit Lakes next week, Lesa and Aron have art and drama this year, and Lesa will continue with Greek classes and piano lessons. I am planning to teach a math concepts class for home school high school kids (and some parents!) this year. I had planned to teach this class last year, but with Erik’s relapse treatment and so many trips to Fargo and Minneapolis, it was impossible to commit. I also have an ACT prep class to teach before the October test date, and enjoy that as well. Too bad the kids don’t seem to like it as much as I do! :-)
We are all still very very thankful for every day!!! Blessings to our dear friends and family who have walked this journey with us these past 15 months!
Check out the photos link below, and the PHOTO SLIDE SHOW below that--I added some new photos and albums to bring us up-to-date!
Donna
Erik’s mom
ZERO NEUROBLASTOMA CELLS PER MILLION BONE MARROW ASPIRATE CELLS!!!!
NINE MONTHS NED AFTER RELAPSE (NO EVIDENCE OF DISEASE-- NEUROBLASTOMA)!!!
MOVE INTO NEW ONE-BEDROOM APT WAS SUCCESSFUL. NICE APARTMENT!!!!!
**********************************************
Hmmmm I think I am giving up on Erik updating this thing. He is busy and working so I guess I’ll let him off the hook—he’ll be the guest writer!
The party for Erik and Brandi was wonderful. It was a very hot day and lots of people drove long distances to see them! In particular, dear friend Anna Getchell and her cousin Donnika drove over 200 miles from Minneapolis to northern Minnesota to celebrate with them! What precious ladies! Anna recently ran a marathon in Anchorage to raise money for lymphoma research, which claimed her husband Judge last November, shortly after their first anniversary. Anna is amazing! She has a couple more marathons planned! Wow! Go Anna!!!!
Erik and Brandi are busy and doing well. Brandi enjoys cosmetology school and Erik loves his job at Best Buy. He is doing fairly well with stamina. However, he has not gained a pound which is making me crazy. He is seeing a nutritionist today and hopefully he can get a prescription for medical assistance will pay for Boost or better yet—Scandi shakes. Erik’s friend Nick Snow liked these shakes and his wonderful mom Shannon reminded me about them. This high-calorie powder is mixed with whole milk and tastes great but is very expensive.
Last week he had a bone marrow biopsy so please pray for clear results. They did send the aspirate to CHLA so I am relieved – it is a very sensitive test and if it is clear, that is a good sign (less likely to be a false negative).
Tomorrow Paul, I and kids are going to help Erik and Brandi move into a new apartment in their complex—a one bedroom. The apartment they have now is a studio and extremely tiny! It will nice to have a bit more room.
Thanks so much for praying for Erik! Everyday is a miracle!!!!
Blessings,
Donna
Erik and Brandi are coming home tomorrow for the long-awaited celebration reception of their wedding! Brandi’s mom is hosting a backyard BBQ for them on July 8th, and we are looking forward to congratulating them on their Oct 28 marriage and the long road through a stem cell transplant and recovery that kept them busy the first 8 months of their marriage. We are all so proud of them and so amazed by this phenomenal young couple—it is impossible to imagine being in either one of their shoes this past year. God has richly and abundantly blessed them in giving them to each other!
Brandi has a week off school, so she can help her mom with the preparations, we’ll all celebrate the Fourth of July, and Erik will get to relax and hang out with us! We are going camping at Oak Hills (Bemidji) after the Fourth.
Erik’s big news is he has a job! He will be starting at Best Buy as a cashier after they return home. We appreciate prayers for stamina and a good experience for him there.
On the medical front: Erik’s doctor wants him on Accutane for three years, which does not thrill Erik very much. He is still having great difficulty gaining weight (none at all) and his DEXA scan revealed significant bone loss so he is also on alendronate (Fosamax) which is a bisphosphonate. He will not have a bone marrow biopsy in July as scheduled. They will wait until Oct/Nov (one year post transplant) to do another biopsy. Please keep praying for him to stay cancer free.
If anyone is still checking this page, BLESS YOU!!! We sure appreciate your care for us all and prayers for Erik! May God bless you for every kindness! Please keep praying!
Donna
About Molly Hollway:
Molly Hollway is a 12 year survivor of Neuroblastoma, the childhood cancer that took the life of Alex Scott, founder of the Alex's Lemonade stands! Molly was diagnosed in 1993 with high risk stage 3, Neuroblastoma. She spent almost a year in treatment receiving chemotherapy, radiation, surgeries and biotherapy.
Links:
Alex's Lemonade Stand For Pediatric Cancer Research
Molly's Minnesota Alex's Lemonade Stand
2005 Stand Photos
Exactly one year ago we sat waiting for the diagnosis. It was supposed to take 2 hours, but it turned into 27 hours. We waited and waited. We were praying for a “very curable” leukemia or lymphoma at that point. Dr. Kobrinsky finally told us the news. He had made the pathologist triple check the slides. It was neuroblastoma again. How could this be? After 13 years? His bone marrow was so packed with tumor they couldn’t find any normal cells.
For several days now I have been thinking back on this past year. One year ago it was spring, and a busy time. Erik was planning to go to Mexico for the summer to serve as an intern for Casas por Cristo, and had a plane ticket for El Paso for the day after finals (May 14). He had tools and camping gear to buy, and was finishing up all his classes. I was worried about how hard it would be to say good-bye for the summer, especially for Brandi. They had just decided on a wedding date.
He was feeling increasingly tired, and his legs and hips ached. He was having a hard time making it up the flights of stairs to his dorm room. He looked so tired when I picked him up a few weeks before the end of the semester to take him shopping for work clothes for Mexico. I asked him, “Are you okay?”
I thought he just wasn’t getting enough sleep.
Mother’s Day fell the day before finals started. I didn’t expect him to come home—I knew he was very busy studying. But he did! We came home from church and were so surprised to see him lying on the trampoline. When he got up, he complained that he was out-of-breath, and he looked so pale, there was no color at all in his lips…my heart was ripped from my chest.
I knew.
Grief came fast and furious. Oh how I cried. Oh how we all cried. It is so different when you know exactly what you are getting into. The whole world came to a screeching halt. All plans ceased to exist. I called our doctor in town Monday morning, and asked if we could get blood work done before our appointment to see him, and he agreed. At the appointment, he had Erik’s blood counts, which were below transfusion level for red cells. He said, “You’re not going to Mexico.” He asked us where we wanted to go? University of Minnesota? Mayo? Fargo? We chose Fargo.
Right as we walked in the door at home the phone rang. It was the pediatric oncologist in Fargo. He asked to talk to Erik, and told him to come in the next morning.
We didn’t come back home for over a week. And during that week of hell, we moved Erik out of his dorm room, and contacted all his professors, while he endured a myriad of tests, biopsies, central line placement, and got slammed with intensive chemo. No finals for Erik or Brandi.
What a year it has been. It saddens me greatly to remember all the details, how we felt during those dark days, and the terrible suffering Erik endured for the better part of a year. But this pain is accompanied by a deep sense of the miraculous. God has blessed us immeasurably since that time. How can I begin to explain that? Beyond all we ever asked or thought. Erik’s response to the chemo was nothing less than phenomenal--much better than he responded to the same chemos 13 years ago. His bone marrow went from 100 percent tumor to 5 percent after two rounds of chemo. Four more rounds cleared his bone marrow completely. Our church and community poured out love and support for all of us. Erik married his true love on a tropical island. He survived a risky stem cell transplant.
Today his counts are all in the normal range (well white cells are almost there…)! He needs to gain weight but he is gaining strength. He is doing well dealing with all the paperwork and hassle of government health programs and disability. (A hassle indeed, but we are extremely thankful for these programs, nonetheless.)
Today he is looking for a dream job—hoping to work his way into video editing and production. Brandi is loving her new cosmetology school. And we LOVE visiting them!
Every day we see the hand of God at work. He has touched Erik and Brandi in such a profound and awesome way. They are truly a testimony to God’s power and grace.
Thankful for today! Praise God!
While Erik and Brandi have been jumping in the waves in Galveston TX, Paul and I had the time of our lives playing and hanging out with tweens and teens at Camp Sunshine Wisconsin! Lesa and Aron thoroughly enjoyed the week as well. Paul and I have a whole new level of respect and admiration for Brandi and Erik – last September when they were volunteer counselors for the tweens and teens, Erik was between rounds of chemo!!! How did he do that??? We will be recovering for the next couple weeks!!! The entire week was masterfully organized (by Amazing Alyssa and John) and the facility was beyond fantastic!!!! One of the resort OWNERS actually volunteered and worked with the 6-8 year olds the entire week! How humbling and inspiring to meet such amazing people.
We played numerous sports and games, mini golf, skate park, swam at the new water park, made crafts, had campfires, and ate really well! We had a sleepover for the older kids, and… THEY ALL WENT TO SLEEP! I was amazed. I have been on a few mission trips with teens and some manage to sleep very little!
It was precious to see the relationships form so quickly, and meant so much to me to see the parents connect as well!
It all brought back so many memories of when Erik was first diagnosed. We were a guest family at Camp Sunshine in Maine in 1993, and we have such vivid memories of that week—what a huge impact it made on us!!! It was such a privilege to be a part of this week, especially since we have a profound understanding of what the families are going through.
It was awesome!!!!
Erik and Brandi will be back next week, and then Brandi starts school. Erik will be looking for a job, and continuing to be monitored every three months, and taking accutane for the next 18 months.
Please continue to pray for Erik’s strength and well-being. The accutane side effects are unpleasant, and we hope his white cells count will recover completely!
Our Hero and Heroine have been busy! So I offered to put on some new photos (I had to leave the accutane photo though—it cracks me up—pardon the pun!) Be sure to scroll down and look at the two new photos!
Backing up a tiny bit, Karl and I had the pleasure of moving them into their new studio apt at the beginning of March, then we all went for a really nice visit for Erik’s birthday on March 19th to help him celebrate 21 years. Anna Getchell invited us all over that same weekend for a wonderful dinner, and we met two cousins (one on Judge’s side and one on Anna’s side). Anna’s cousin is moving from California to live with Anna, and hoping to go to grad school at the U of MN. Erik and Brandi are house-sitting for Anna, and can’t join us for Passover meal tomorrow. Too bad! Karl sure enjoyed watching Brandi eat horseradish for the first time!
We went last weekend to visit them again, and I went to a late-effects seminar. E & B will be coming up here this week to celebrate the holidays with us and Brandi’s family, and see Lesa baptized on Resurrection Sunday! This is especially meaningful, because Erik was baptized after his first transplant at 8 years old, also on Resurrection Sunday!
Truly first fruits for God!
Erik is looking for a job, and doing paperwork. He had to get his loans deferred, and is trying to get a waiver approved because SSI paid him too much (they admit it was their fault), and naturally they would like it back. He is trying to find his Hennepin county case worker (who handles medical assistance) because all of his paperwork was sent from Becker county to someone in Hennepin county…and he hasn’t located the right case worker. Hey, if you happen to be that social worker and are reading this, could you call Erik???
Though we are sorely disappointed Erik and Brandi won’t be joining us for Camp Sunshine--Wisconsin the last week of April, we are excited for them to take their first “Road Trip” (which just brings shudders to the rest of us who have done that more than a few times…) to Galveston! Brandi will be able to add several new states to her list!
Paul and I have been assigned to the 9-12 and teen groups since E & B won’t be there—not sure we will be considered as “cool” as E & B, but we are looking forward to it so much! When we got the schedule today—there was much happy squealing from various quarters!
We appreciate prayers for Erik’s job search, and for his continued miraculous good health. White cells seem to be stubbornly low. He needed a GCSF shot again last visit with his BMT doc (almost 5 months post-transplant). Erik sure looks good with eye lashes and eye brows. His hair is coming in slower than his beard. We are still guessing at the color. He is taking accutane two weeks on and then has two weeks off. I hope that getting off work to go in for check up appointments will not be difficult. Brandi starts cosmetology school in May, and she is really looking forward to it. She will be in a small class of 10 so she will get more personalized attention.
Good News!
"Therefore purge out the old leaven, that you may be a new lump, since you truly are unleavened. For indeed Christ, our Passover, was sacrificed for us." I Cor 5:7
"And I looked, and behold, in the midst of the throne and of the four living creatures, and in the midst of the elders, stood a Lamb as though it had been slain…”
"Worthy is the Lamb who was slain to receive power and riches and wisdom, and strength and honor and glory and blessing!"
Rev 5:6, 12
Been a long time, huh? Well, you can't expect much consistancy from college-age kids. Maybe I can elaborate a little...
We still go to bed around 2am. We get up at Noon. Meals consist of whatever hasn't expired yet. Dishes get washed when we can't find the sink. We've vaccummed once so far. At 4pm each day we start to discuss what we should do. At 7pm we give up and watch a movie. We're still half unpacked, wear clothes we find on the ground, and you know what? I don't have one hint of regret. Brandi and I are barely adults and we want to hang on to our youth as long as we can.
Unfortunately, that's not too much longer. We've got bills, Brandi's got her cosmotology school, I'm getting a job as soon as I can because I can't stand the complex SSA system anymore. Six years from now we're planning on having a house and thinking about kids... to do all that we have to start being a normal couple. That stinks.
At least we're getting a lot done in this "early mariage" phase. I'm regaining my strength, we're paying our bills way in advance, we get to swim, play racquetball, walk around the Mall of America, and take awesome road trips to Eau Claire, WI (just got back--there's a awesome cheese factory on the way!), Duluth, MN, and the best one at the end of April... GALVESTON, TX!!! Courtesy of the best Grandparents in the WORLD!!! Love you guys!
Also thanks to everyone who sent me presents and birthday wishes! Love you all!!!
Erik
--> Oh, yea! Almost forgot... LA. sent back the latest test COMPLETELY NEGATIVE no "maybe"s, "don't know"s, or "unsure"s. Absolutely 100o ma' 'blastoma! Still on accutane, though. My mouth gets so dry in the morning, I nearly choke! Must sleep with my mouth open or something.... anyways, bye!
Friday, March 3, 2006 10:00 PM CST Hey Everyone! It is meeeeeeee Brandi ;)
Wednesday, March 1, 2006 11:48 PM CST Sorry, Aron. There was no songs for Worldbuilder on ocremix.org... actually none of the Lego video games had remixes. Hey Mom, tell Aron I looked for him :) Tuesday, February 28, 2006 6:17 PM CST ****UPDATE FROM MOM****
Saturday, February 25, 2006 1:13 AM CST WOW! We are almost completely 100% packed up and ready to move into our new apartment tomorrow!!! My Mom is coming to help us move stuff, so it shouldn't take more than one trip. Nice little studio apartment in Bloomington, MN. You can actually walk to (if you're brave enough to cross a major highway) the Mall of America from there! Nice, huh? So far we've only had one little complication with the moving process--this cool little futon we ordered from Hom Furniture shipped with the wrong part in it. We'll pick up a new one on Sunday for no extra charge, but it kinda broke our happy-go-lucky-for-new-apartment stride. That's what you get when it's made in China... Friday, February 24, 2006 2:11 AM CST Well, day 100 was day before yesterday... not much happened. I thought I was supposed to get more scans and stuff around day 100, but it looks like they're pretty much letting me go free. I get my hickmen out next week. That's going to make swimming and taking showers--actually pretty much everything easier. Accutane's starting to bug me though.
Monday, February 20, 2006 2:35 AM CST Hey all of you!! It is me.. Brandi :)
Thursday, February 16, 2006 2:06 AM CST Happy Valentine all you love birds out there! Hope you all made a significant contribution to the Hershey's industry!
Monday, February 13, 2006 3:09 AM CST Hey everybody! Just got the results from Brandi's tests--
Wednesday, February 8, 2006 2:28 AM CST Hey everybody! Sorry there hasn't been an update in a while. We've been having a lot of tests on both me and Brandi, and took a trip home this weekend, but here's the update you've all been waiting for!
Saturday, January 28, 2006 3:48 PM CST Hey every body! Quick update as I am soon heading out to have dinner with Anna Getchell who has graciously invited us to a steak dinner--I love steak by the way!
Wednesday, January 25, 2006 3:38 AM CST Monday, January 23, 2006 2:09 PM CST All Better!!! Saturday, January 21, 2006 10:56 PM CST Hey All!
Wednesday, January 18, 2006 4:54 PM CST Good morning everybody! It's probably afternoon for the rest of you, but I just got up. We've been having a lot of late nights. I don't know how Brandi can just bounce out of bed in the morning. We were up till 4am with Ashlee and Patrick Monday night, playing Texas Hold'em, Monopoly, and watching "Dumb and Dumber". I lost first in both games, of course. Next time I'm bringing Candy Land.
Monday, January 16, 2006 3:48 PM CST Platelets still on the climb!!!
Thursday, January 12, 2006 1:45 PM CST Well, Erik and I had a WONDERFUL break from the clinic... we had TWO days off last time!! We relaxed, went on dates, rented movies, ate out, giggled uncontrollably....
Saturday, January 7, 2006 10:41 PM CST Hello!!!
Sunday, January 1, 2006 2:03 AM CST HAPPY NEW YEARS EVERYBODY!!!!!!
Friday, December 30, 2005 4:19 AM CST Hey everybody! It's Erik!!! I havn't felt well enough to write an update of my own in a long time... or at least I havn't gotten off my lazy butt to do it, but I thought it was high time to take controll my self. So what's been happening? Thursday, December 29, 2005 6:29 PM CST WE DIDN'T HAVE TO GO TO CLINIC TODAY!!! Tuesday, December 27, 2005 12:50 AM CST Wonders of God and the Holiday Season!!!!
Friday, December 23, 2005 6:54 PM CST
Thursday, December 22, 2005 2:21 PM CST GOOD NEWS!!
Tuesday, December 20, 2005 10:01 PM CST Well, Erik had a busy morning, tests tests tests...all of which came back GREAT! First he had a Chest X-ray, show the fluid around the lungs isn't getting any worse, it is staying the same, so at least it is not getting worse. Then he had a special scan that looked more closely at how everything was flowing between his liver and gall bladder...that test too showed that everything was NORMAL and in good working function!!! Following that was an echocardiogram that checked the function of his heart...sometimes if the heart is not beating as strongly as it should, it can cause the very symptoms Erik is having (Fluid retention in abdominal wall, enlarged liver, elevated liver funcions..) but (drumroll playing) test shows...NORMAL!!! (Crowd rises and cheers!!) Also the BIG news of the day is that his ALT and AST <--Liver functions from previous journal entry> WENT DOWN TODAY..VERY GOOD NEWS! The doctors said that he is moving in the right direction although none of them have a clue exactly what is going on, their main thought now is some kind of infection somewhere. VOD has been ruled out!! Hepatitis as well along with any other liver complication (except for infection). Tomorrow they are going to take a little bit of the fluid from Erik's stomach and test it to see if there is anything going on in there. They just made him do this thing where he had to inhale this salt solution (nebulized) that would make him cough (as if he wasn't already) so that they could get a sample of the stuff he coughed up..how fun (wrinkly brow face;))He did great though, he is the strongest man I know! I am the luckiest girl. Tomorrow will be a few more tests to try and figure the mystery out, but until then I could not be happier. God is being so amazing to us, answering prayers left and right. I just think it is amazing how much he is listening. I prayed today that his liver functions would be down, as soon as I got done praying I got this excited feeling that made my tummy turn all over. When we got back to the room, they handed me the count sheet and...sure enough the AST/ALT were down from yesterday!! I cannot get enough of God!!
Tuesday, December 20, 2005 8:35 PM CST Good News All!!! Sunday, December 18, 2005 7:30 PM CST Hey Everyone...
Thursday, December 15, 2005 11:43 PM CST Well...
Wednesday, December 14, 2005 7:40 PM CST Hello Hello... Tuesday, December 13, 2005 10:56 PM CST Hey All,
Saturday, December 10, 2005 10:31 PM CST My last day as a teenager....
Thursday, December 8, 2005 8:59 PM CST Hey All!
Monday, December 5, 2005 6:37 PM CST YAY! YAY! YAY!
Sunday, December 4, 2005 5:08 PM CST Hey All! Friday, December 2, 2005 6:46 PM CST Prayers, God, Life is Awesome! Thursday, December 1, 2005 11:59 AM CST Hey Everyone, Wednesday, November 30, 2005 5:55 PM CST Hey Hey!! Sunday, November 27, 2005 5:41 PM CST Hey All!!! Friday, November 25, 2005 5:17 PM CST Hey Everybody!! Wednesday, November 23, 2005 10:33 AM CST Hello everybody!
Tuesday, November 22, 2005 12:49 AM CST Well, Erik got his first fever last night, but there is no sign of infection so that is good. They put him on some new anti-biotics so the fever started going down this morning. His mouth is still pretty sore, they have bumped up his morphine dose a few times. His nausea is doing good, as long as he doesn’t swallow any of that yucky stuff in his mouth. The doctors come in everyday and they said all of his functions and levels are all normal and doing great! They said that his body is really taking this well and that this week will probably be the hardest, but we should see an upswing here soon. His platelets are pretty low, so he will be getting some of those today. Last night when he got his fever, we had to go down and get a chest x-ray and Erik walked all the way down there and all the way back!! He actually wanted to take the long way around back to the room!! I was so impressed with him. I thing overall he is just really tired, it is hard to sleep because of his throat and mouth plus he can’t swallow anything so he has this air suction tube that he can use instead of having to spit all the time. He does usually fall asleep for a little while during the night, although the nurses come in all the time so it is hard to be uninterrupted. He is sleeping right now though, so hopefully he can stay that way for a little bit. The first hug I get to give him is going to feel amazing, it has been so long since I have hugged him. I really have been praying that he starts to feel better, he has been so miserable for the last few days. It is good to know that this is the worst part and that things should be going up, not down. Erik and I ask all of you for a special prayer today, not for us but for Judge Getchell. Judge is also battling cancer and is going through a difficult time right now, we ask that all of you please keep him in your thoughts and prayers today. If you would like to visit his site, it is : www.caringbridge.com/mn/getchell. Thank you so much.
Sunday, November 20, 2005 11:45 PM CST I have the most wonderful “answered prayer testimony” to share!! On Friday, the transplant day, Erik had gotten sick once during the transplant and then later on that day, he was just feeling horrible and it was so hard for me to see him and not be able to physically do anything for him, but I just got down on my knees and prayed to God that he would heal Erik and just sooth his stomach, let him not be sick anymore, I prayed that God would lay his hand upon Erik and make him better, just like the stories in the Bible. Erik got out of the shower and laid down for awhile. After about and hour, I asked him how he felt and he said that he didn’t have any nausea at all. I was so excited and amazed! For the rest of the night he said that he didn’t feel sick or anything….just sleepy. I trusted God and he totally answered my prayers and Erik has been doing good nausea wise since then. He has had a few little “waves” but they go away after a minute or so. All those prayers are really working, KEEP THEM UP!! Also, we got the test back from Seeger’s Lab in L.A from the last bone marrow biopsy (11/02)(they do the really sensitive tests on the bone marrow so they can tell exactly how many cells per million are neuroblastoma) the results say: 0 CELLS!! NO TUMOR PRESENT!!! They also did the same tests on his stem cells for transplant and those also had 0 cells in them!! So that kind of paves the way for a good outlook! I cannot believe how God is taking such amazing care of him, I really trust with all of my heart that everything is going to be okay.
Friday, November 18, 2005 11:18 AM CST Well, Erik just finished his transplant!!!! They started at about 9:15 am and just finished now at 10:30 am. He had 10 bags of stems cells that they gave him, they were small bags, but it still was a lot! He did really good, he did get sick once during the infusion, but he has been pretty nauseated the last couple days. The preservative in the stems cells is called DMSO and that can cause nausea as well. He is sleeping right now, they gave him benedryl and Tylenol as pre-meds, so he is pretty sleepy. The preservative that he got is expelled through the lungs and so the room has a unique smell to it. It smells exactly like they said it would…cream corn. I can’t really smell it while I’m in the room, but when you walk out and come back in you can. It really isn’t bad though. Now, we just have to wait for those counts to fly on up, they will start the GCSF today, so that will hopefully speed the counts up a little. They come in and do blood work every morning, but they have only been doing chemistry not hematology, but they should start tomorrow morning with his counts. They did check his platelets however and those have dropped down to 73 so those took quite a dive. They are still trying to figure out anti-nausea for him, I guess the Phenergan (Thanks Kim for the suggestion!) is in the same category as Trilifon and Ativan, both of which he is allergic to. I did ask about the Reglin/Benedryl (Thanks for the reminder Donna!) and so they are going to check on that, but we haven’t heard back yet. They did up his Zofran but it is at the maximum dose, after that it can actually cause nausea. Hopefully the nausea will go away soon, they said that the DMSO can cause nausea for the rest of the day at least. Yesterday was the worst day so far, he felt pretty nasty all day. He got sick three or four times, but he doesn’t have anything in his stomach, his appetite has completely left. I have been praying A LOT, it is pretty hard to see him sick so much, I wish I could do something to make it go away, but I know only God can do that, so I have been praying and trusting. I really really hope these next few days go better and that he will be on the upside of this. His attitude is still great! He is being so wonderful and patient. I truly admire him, he is the most wonderful person to me. I just hope he can just sleep through the rest of today and start feeling better tomorrow. We just ask for prayers that his stem cells will engraft quickly and that he won’t have any infections or fevers. The doctors keep saying that he WILL have fevers, but Erik wants to prove them wrong. When Erik first started going through treatment, Dr. K said that he would get a fever after chemo’s and he only got a fever twice, so I know that God can protect him.
Wednesday, November 16, 2005 6:45 PM CST Hello,
Tuesday, November 15, 2005 5:24 PM CST Well, today was Erik’s first day of sickness. He got sick early this morning, only once so far though. He just hasn’t felt very good today. He did perk up a little after he got sick, but now is just resting. It is really hard to tell him that he has to get up to take a shower, but this chemo is really damaging to the skin, they even have to change his sheets every time! The worst part is that he has to take that anti-fungal pill which is huge, but I did talk to the nurses and they are going to switch it over to an IV bag, that will be nice. He is still doing really good though, his spirits are still up and he is trying really hard to just relax and keep his stomach settled. He did manage to get some crackers and a half of a sandwich down. He has lost about ten pounds so far, but I told him that it just means that when he gets out I get to cook that much more for him: ) One more day of chemo and then he will be all done. The doctors were thinking of giving him another anti-nausea on top of the Zofran, however, the only others that they have are Ativan, which Erik is allergic to and Compazine, which makes Erik get these horrible shakes. I am just going to rely on prayer and be trusting that it will work. Hopefully tomorrow goes better, I just keep trying to tell him that he is almost done.
Sunday, November 13, 2005 7:37 PM CST All done with Busulfan!!! Erik started his Melphalan today and I am happy to report he is still doing great! So far he has had only a teeny bit of nausea, but nothing that the Zofran hasn’t taken care of! HE really is doing great. Now we just have to watch for mouth sores, but I think that he will do good. His attitude is amazing. It is really hard to worry when he is so wonderful. He is definitely getting his rest, in fact we both are. Both of us slept into the better part of the afternoon today. We got up and Erik had lunch and then we watched a funny movie. After the movie we had the best conversation going over old memories and giggling about them. We are still having a lot of fun despite the chemo and little waves of nausea. I am pretty sure the nurses have heard us laugh more than they have heard Erik say “I don’t feel good”. I love taking care of him, he is the sweetest person to take care of. I am so impressed with how well he does with the whole situation. He is still eating good, his appetite is a little decrease which is expected. He has lost a couple pounds, nothing to worry about. He mostly nibbles all day instead of eating an actual meal. He is keeping it all down though which impresses me!
Sunday, November 13, 2005 7:37 PM CST All done with Busulfan!!! Erik started his Melphalan today and I am happy to report he is still doing great! So far he has had only a teeny bit of nausea, but nothing that the Zofran hasn’t taken care of! HE really is doing great. Now we just have to watch for mouth sores, but I think that he will do good. His attitude is amazing. It is really hard to worry when he is so wonderful. He is definitely getting his rest, in fact we both are. Both of us slept into the better part of the afternoon today. We got up and Erik had lunch and then we watched a funny movie. After the movie we had the best conversation going over old memories and giggling about them. We are still having a lot of fun despite the chemo and little waves of nausea. I am pretty sure the nurses have heard us laugh more than they have heard Erik say “I don’t feel good”. I love taking care of him, he is the sweetest person to take care of. I am so impressed with how well he does with the whole situation. He is still eating good, his appetite is a little decrease which is expected. He has lost a couple pounds, nothing to worry about. He mostly nibbles all day instead of eating an actual meal. He is keeping it all down though which impresses me!
Friday, November 11, 2005 8:02 PM CST Well, today was pretty uneventful. Erik slept most of the day, until about 4:30 pm actually but at least I know he is getting good rest! He still hasn't felt any nausea!!! He ate good today too so hopefully we can just keep this up for another week. I went and bought Erik 10 packets of the "magical" green tea, so hopefully that will help too!
Thursday, November 10, 2005 10:37 PM CST ALL IS WELL TODAY!!!
Thursday, November 10, 2005 10:34 PM CST ALL IS WELL TODAY!!! Tuesday, November 8, 2005 8:13 PM CST Hello everybody! Erik finished his second day of radiation. He did end up getting sick last night however. Around 9:00pm I called the hospital because Erik had a pretty severe headache. I spoke with one of the bone marrow transplant fellows on-call and he said that he wasn’t quite sure what could have caused the headache, but that if it got any worse to go to the emergency room. Erik said that it wasn’t getting worse, but because it hurt so much he felt pretty sick to his stomach. Once he got sick, the headache started to go away and Erik was able to fall asleep. I kept a close eye on him throughout the night and he did just fine after that. This morning he got up, ate breakfast and felt okay. He had to have a PET scan this morning at 9:00 am. He felt pretty good throughout the day, we came back to the apartment and I made Erik Ramen noodles (flash back from college). He said the soup felt good on his stomach, so I was happy. The radiation went good again, this time they took the mask off Erik a little sooner, which I think helped a lot because he didn’t have a headache when he got done. Fortunately, Dr. Paul Metz (yet another doctor that we see down here) gave Erik a prescription for oxycodone, a headache medication. Plus, Dr. Dusenberry (radiation doctor) gave him a prescription for dexamethasone which helps with the nausea and headaches. He is pretty much well medicated which I hope will make the night go smoother. So far tonight he is doing MUCH better than last night. He doesn’t feel sick at all, just a little tired and he is really focusing on stay relaxed. He did eat 3 bowls of Ramen noodles for dinner though, so he really is doing amazing. All those prayers must be kickin’ in :)
Monday, November 7, 2005 11:25 PM CST Well, today was an exciting day! This morning we had an "exit conference" with Dr. Baker where he basically went over all the tests with us and re-explain the transplant process. All of Erik's tests were GREAT!! His bone marrow biopsy was clear! The bone scan showed no tumors, the MIBG scan was negative (NO TUMORS!!), and the CT scan was clear!!! There was one little part on the CT scan that showed up in Erik's lungs however, there were two small nodules in each of his lungs. Of course this worried us at first, but Dr. Baker explained that because it did not show up on any of the other scans, it was most likely just a spot where an infection may have been long ago. He said that there is really no need to worry that they are cancerous, otherwise they would have lit up on the MIBG scan. Also, that they were so incredibly small that there is no way a surgeon could even find them in order to get a biopsy. Back in June I think it was, Erik got a cold and ended up having a cough for quite sometime so those areas on his lungs could just be spots where that infection had been. NO WORRIES! The doctor said that Erik was very healthy going into this, and the healthier you are the better transplant can be. Saturday, November 5, 2005 7:32 PM CST Hey! Thursday, November 3, 2005 8:55 PM CST HELLO EVERYBODY!!!! Thursday, November 3, 2005 6:26 PM CST Well, the honeymooners are getting settled in between appointments and tests. It has been a whirlwind so far! A few of the things on Erik's calendar: bone marrow biopsy, MIBG scan, CT scan, radiation planning and consult, various x-rays and blood tests, and appointments with the social worker and BMT doc, and bone scan and DEXA scan, various heart function tests, pulmunary function tests, kidney tests, new line put in his chest, etc etc etc, and first grocery shopping trip together as a married couple.
Wednesday, November 2, 2005 10:26 AM CST WELCOME BACK HONEYMOONERS!!!!!!
Friday, October 28, 2005 9:38 AM CDT The manager of the university apartments will meet me on Monday Oct 31 at 11 am. I’ll move in their belongings…and do some decorating…and shop for groceries…and jump out of a closet and say “BOO!” when they come in at 2 am! Ha! Just kidding, I’ll meet them at the airport, and they can follow me to the apartment.
Tuesday, October 25, 2005 10:32 PM CDT Lots of news! Jayne, the lovely friend who booked their trip, forwarded an email from the general manager of the resort (Sandals Grande) and he said he spoke with Brandi and Erik this morning. Good! We have evidence they made it! It was sweet of Jayne to let the manager know about Erik and Brandi’s special circumstances. I hope they are treated like royalty! Saturday, October 22, 2005 9:41 PM CDT Erik and Brandi are leaving tomorrow for their trip! They will come back married, and undergo a greater stress than most of us have ever known before the ripe old age of 21. Please pray for a wonderful trip, and smooth sailing through transplant!
Wednesday, October 19, 2005 10:11 PM CDT Paul and I have been discussing how we feel about our first born son getting married. For some strange reason, it is not the emotional experience I expected it to be. Could it have anything to do with the fact that emotions have been used up lately? I don’t know. We tried to hypothesize how we would be feeling right now if it was Lesa getting married, since she is our only girl. That is a problem because we aren’t planning to ever let her TALK to a boy, so that is no help. I wonder how it feels for Brandi’s mom, there must be bucket loads of emotion going on there...
Sunday, October 16, 2005 3:46 PM CDT NB Statistics, part 2.
Friday, October 14, 2005 5:05 PM CDT Neuroblastoma is a rare cancer.
Tuesday, October 11, 2005 7:29 PM CDT Our powers of prediction are slipping. Erik did NOT need red cells yesterday, but did need platelets, so they made a run to Park Rapids for counts, DL to see the case worker, then Fargo for platelets, and were back before midnight! An ALL TIME RECORD BREAKER for speed in obtaining blood products! Usually they end up being released some time between midnight and 4 am, and for some reason the hospital thinks it is of no consequence that there is still a 90 mile drive home! I am sure that Erik will need red cells on Thursday. I graphed his hemoglobin, and the slope of the line extrapolates to transfusion level…you watch. Who says there is no useful real life application of algebra?
Sunday, October 9, 2005 10:04 PM CDT Thanks to a dear fellow neuroblastoma mom from the N-Blast list, I now know how to add more photos! Thanks Connie! Yipee. This is fun!
Monday, October 3, 2005 7:18 PM CDT Truly these are the DAYS OF AWE!
Sunday, October 2, 2005 8:09 AM CDT We are going to Steve's benefit this Sunday. PLEASE consider a gift to his benefit fund, and if you send anything to us (made out to GO STEVE) we will take it to Steve's benefit dinner next Sunday. See Steve's site below for more of his story. There is also a way to donate to his fund online, as well as address where you can send a check. It is unbelieveable what he has been through since last April.
Friday, September 30, 2005 11:09 PM CDT We are all in such a daze...and enjoying the anticipation!
Thursday, September 29, 2005 9:30 PM CDT To see Erik and Brandi on the news:
Wednesday, September 28, 2005 10:42 PM CDT Exciting news!
Monday, September 26, 2005 8:45 PM CDT Another good day.
Friday, September 23, 2005 8:23 PM CDT I had my first day of anxiety-free living since Erik relapsed.
Thursday, September 22, 2005 9:17 PM CDT Please pray for Erik tomorrow and the decison about transplant. If he decides to proceed, he is scheduled for one more chemo in Fargo (Sept 28) and begin transplant work up October 24th.
Tuesday, September 20, 2005 7:52 AM CDT Now that I am retired from amateur oncology, I thought I would have all kinds of free time on my hands. I don’t know what happened. Somehow yesterday was still spent emailing/talking/planning/reading/thinking about Erik’s next step in treatment. I talked to a couple doctors and lost count of the nurses and receptionists and coordinators…
Saturday, September 17, 2005 2:32 PM CDT I regretfully announce my premature retirement. I have decided the practice of amateur oncology is no fun, pretty stressful, time-consuming, and the pay is not very good. Nothing, actually.
Thursday, September 15, 2005 7:59 PM CDT Still doing a pretty terrible job waiting. Tuesday, September 13, 2005 10:50 AM CDT Waiting is not one of things I do best.
Thursday, September 8, 2005 2:46 PM CDT A Day at the Ludwinski Household
Wednesday, September 7, 2005 9:17 AM CDT One of Erik’s favorite places in the world (and he has been quite a few places!) is Gooseberry Falls near Duluth. He even wrote an essay about it in freshman comp. Erik and Brandi finally got a day to drive there and hike the area around the falls, and Erik was feeling great. They had to race back, sleep just a few hours, get up and drive to Fargo for 7:30 am blood draw, and then he had his 6th bone marrow biopsy. Of course, after rushing to get there on time with almost no sleep, the cancer center was seriously behind after the holiday, they made them wait for HOURS! Ashley, a friend from college surprised them with a visit, and they went to lunch with her. They dragged themselves back here for a nice farewell dinner for Grandma and Grandpa who stayed here for the summer, but are now headed back to warmer climates for the winter.
Thursday, September 1, 2005 2:06 PM CDT Decisions are so hard to make. You research, ask questions, compare, pray, wrestle, until you are forced to make a decision (after you have exasperated a few doctors along the way.) Then when you finally make the decision, a bit of shock sets in. You don't have to mull this over and over and over 24 hours a day any more? Then you pray an awful lot. Please God let this be the right decision. Please God let this work...
Monday, August 29, 2005 11:16 PM CDT Erik is back in the hospital again, for blood and platelets. We'll likely be home in the morning. I am hoping Dr. K will pop in for morning rounds.
Sunday, August 28, 2005 2:42 PM CDT Erik is feeling low but taking advantage of "music therapy." He is composing music on his computer. If we can figure out how to get it on the web, we can put his own music on this site. See the hair on his face and fuzzy head!
Friday, August 26, 2005 9:00 PM CDT Short update! Aron wants me to read him a book, so better make this quick.
Thursday, August 25, 2005 8:02 PM CDT Isn't she cute? This is Sophia, an anklet who came to the benefit. I love how Linda doesn't "overlook" the important people when she has a camera!
Wednesday, August 24, 2005 8:23 PM CDT The photo is courtesy of Linda Haugland who just sent me tons of photos from the benefit...wow there are some excellent photos! Thanks Linda!
Saturday, August 20, 2005 2:15 PM CDT Words utterly fail me.
Wednesday, August 17, 2005 11:09 AM CDT Disappointing.
Tuesday, August 16, 2005 4:41 PM CDT HAPPY BIRTHDAY MOM! Thursday, August 11, 2005 10:06 PM CDT Things went WAY better yesterday.
Wednesday, August 10, 2005 12:09 AM CDT This harvest business turned out to be so much more eventful than we anticipated.
Monday, August 8, 2005 8:28 PM CDT Well, they did harvest today even with positive blood cultures, and we won't know until tomorrow:
Sunday, August 7, 2005 4:30 PM CDT A real fast update...
Friday, August 5, 2005 11:56 AM CDT We found the computer room!
Tuesday, August 2, 2005 7:45 PM CDT Dr. Verneris called this afternoon and wanted to touch base about options for Erik. At U of Minn you get a package deal--a team of doctors. Because it is a teaching hospital, you get professors and fellows and interns...oh joy. We did that at Children's in Boston too. He discussed the pros and cons of all the issues concerning transplant, and it is always a bit discouraging to hear about the risks of the procedure (but we knew that).
Sunday, July 31, 2005 9:13 PM CDT Blessings to you dear reader!
Friday, July 29, 2005 10:26 AM CDT More answered prayers every day. God is so good!
Tuesday, July 26, 2005 10:08 AM CDT I found all kinds of nice people to talk to yesterday.
Saturday, July 23, 2005 1:05 PM CDT Today is Karl’s 16th birthday, and he is in Montana on a mission trip. Happy Birthday Karl! We miss you!
Monday, July 18, 2005 3:19 PM CDT In between calls to Bone Marrow Transplant Coordinator, Records, Roger Maris Cancer Center nurse, and Financial Counselor at U of Minn, and helping Aron with his new math book (he has math mania right now)...I'll try to update briefly!
Wednesday, July 13, 2005 9:26 AM CDT Bone Marrow Biopsy:
Monday, July 11, 2005 7:59 PM CDT Whew, another toasty day.
Saturday, July 9, 2005 10:38 AM CDT Ah, Saturday!
Wednesday, July 6, 2005 10:11 PM CDT Life is still a whirlwind.
Monday, July 4, 2005 3:17 PM CDT Happy Fourth of July!
Thursday, June 30, 2005 8:55 AM CDT Lots of good news!
Tuesday, June 28, 2005 10:40 AM CDT With the grave risk of boring you, I will recount yesterday. Brandi and Erik drove through nasty rain to John's house in Fargo Sunday night. Erik still has a cold and cough, but improving. Brandi's brakes on her car started a horrible grinding sound Monday morning on the way to the clinic at 7 am, so shortly after Erik's bilateral bone marrow biopsy (third one---OWIE), Brandi drove back home to Lake George (120 miles one way) so her dad could fix her brakes. I left home at 6 am to meet them at the clinic and stayed with Erik while he had his 3rd echocardiogram, another chest x-ray, and first dose of topo/cyclo. He did really well, minimal nausea, and didn't sleep the entire day as he did with the last two rounds of doxorubicin/vincristine/cyclophosphosphamide. He got a new anti-nausea drug called aloxi that so far seems to be working very well. Brandi drove back here last night so they could leave from here at 6 am to get to Fargo for today's chemo, and she has a terrible cold now. I tried to convince her to let me take him, but she wanted to go since she "missed" yesterday.
Sunday, June 26, 2005 11:28 PM CDT We left Thursday for the cities and went to the Como Zoo in 97 F heat. UGH! After spending two hours at the zoo, I went back to the car to discover someone (the driver who wishes to remain nameless) left the front door OPEN, with my purse, two MP3 players, and all our suitcases in plain view! Thankfully nothing was missing. Except a few screws in our heads. We cooled off at the hotel in air-conditioning while tornadoes threatened Park Rapids area. Erik started coming down with a bad cold.
Wednesday, June 22, 2005 9:02 PM CDT Erik enjoyed a relaxing day but dear Brandi went to clean cabins, and it was so hot! She did get to cool off at her pool at her house after work, and enjoy dinner with her family. We are so thankful her family shares her with us so nicely!
Tuesday, June 21, 2005 3:01 PM CDT Erik has been sprung!
Monday, June 20, 2005 9:50 PM CDT Erik is still in the hospital, and I am still feeling guilty that Brandi has been there with him all on her own, ever since the 3-5 am drive Saturday night! I thought surely he would be out the next night, but no.
Sunday, June 19, 2005 11:23 AM CDT Happy Father's Day!
Saturday, June 18, 2005 12:15 AM CDT What a great time we all had at Relay for Life last night! It was an absolutely gorgeous evening, and Erik felt well enough to lead the survivor walk as torch bearer.
Friday, June 17, 2005 2:52 PM CDT Tonight is Relay for Life!
Wednesday, June 15, 2005 3:25 PM CDT Erik is having a quiet day, while I continue to make phone calls. Brandi took kids to play with her sisters, and it is a gorgeous day!
Tuesday, June 14, 2005 6:43 PM CDT Thank you faithful friends! It soothes my heart to know how much you care. Erik is doing well today. Brandi took Erik to Park Rapids for urine culture, and I imagine we'll find out eventually if he has a bladder infection. It can be chemo-related damage (hopefully temporary) to his bladder. The cyclophosfamoide (cytoxan) is rough on the bladder. If no fever develops, we get to stay home, until Thursday when he is likely to need platelets in Fargo.
Monday, June 13, 2005 1:43 PM CDT Yippee skippy!
Saturday, June 11, 2005 12:43 AM CDT I am finding that I am increasingly humbled as each day unfolds. This is uncomfortable. Albeit necessary.
Thursday, June 9, 2005 8:39 AM CDT Good morning...Erik is doing fairly well. He has managed this round of chemo (doxorubicin/vincristine/cytoxan) by sleeping almost around the clock since Monday afternoon. No throwing up yet, but feels continuously queasy. He nibbles on doritos now and then. Hopefully he will do okay going home this evening!
Tuesday, June 7, 2005 8:59 PM CDT ***********************************
Monday, June 6, 2005 5:46 PM CDT WHOEVER IS PRAYING>>>KEEP IT UP!!!!!
Monday, June 6, 2005 0:48 AM CDT Check back Monday afternoon...I should have some news about Erik's bone marrow and chemo decision by Dr. Kobrinsky. Friday, June 3, 2005 2:50 PM CDT We had a wonderful whirlwind visit to Mt Rushmore! Brandi fully deserves her status as Honorary Member of the Ludwinski Family. She endured, with flying colors, the initiation experience of 22 hours in the car in a mere three days with all the Ludwinskis except Paul (who had computers to fix). She offered comfort during an emotional breakdown of a certain 5-year old (who shall remain nameless) who couldn’t get his banana peeled on his own, and his sister who frequently announced in ever-increasing tones that his constant jabbering was GIVING HER A HEADACHE. Brandi said it was fun, nevertheless.
Monday, May 30, 2005 8:25 AM CDT MONDAY EVENING UPDATE:
Friday, May 27, 2005 10:57 PM CDT (SUNDAY morning addendum...this is Mom): Quick note! I just wanted to ask you to pray that Erik's white cell count takes a big jump so we can get out of here. Seems silly to hospitalize someone who is feeling so well. Erik did need platelets again yesterday (and had a reaction again...third time), so I guess we might as well be here for that. But we'd all rather be home!
Thursday, May 26, 2005 6:50 PM CDT Thank you for praying for my brother David. Looks like the cancer is contained and he will not need chemo or radiation. What an answer to prayer! His surgery went well today and he is home.
Thursday, May 26, 2005 8:14 AM CDT Yesterday we found out my brother David (Erik's uncle) has testicular cancer, and this morning he is in surgery. He'll find out what stage it is and treatment recommended. Please pray it is localized and he will not need chemo or radiation. This news is on the heels of his son Josh's broken pelvis from bike accident, wife Tina's tests shows she has kidney stones, and college daughter Nicole was in car accident last week. I appreciate your prayers for this dear family. David and Josh were going to come to visit Erik this summer. I pray that is still a possibility.
Wednesday, May 25, 2005 6:49 AM CDT Erik is still well, and no problems to speak of! No fever, mouth sores, digestion troubles, or bleeding. With hemoglobin staying under 10 (normal is 13.5 to 17.5), it is amazing he doesn't have constant headaches, shortness of breath, and racing heartbeat, and need lots of naps. He was fairly active yesterday with no naps! His appetite is good, spirits are good, and he worked on a website for Paul's computer business. Thanks so much for praying for him. It is very evident Erik is bathed in prayer right now. Last night we sat around a camp fire and ate and told stories. It was fun.
Tuesday, May 24, 2005 8:26 AM CDT It is a nice morning when you get to stay home. The track record so far is:
Monday, May 23, 2005 8:49 AM CDT Another good night of rest! God is so good. We are off to Fargo for the counts, platelets, and stitches out of the hickman. Erik did have a little problem with bleeding last night, but it seemed to stop pretty quickly each time, praise God.
Sunday, May 22, 2005 3:39 PM CDT Erik is still enjoying fever-free living! Miracle! Miracle!
Saturday, May 21, 2005 11:01 AM CDT God hears our prayers! It is a miracle that Erik hasn't developed a fever yet. THANKS FOR PRAYING! I can't overstate this...his white cell count dropped to zero yesterday, and has an ANC of ZERO. That means he has no protection from bacteria. Dr. Kobrinsky told us yesterday "You'll be in the hospital this weekend."
Friday, May 20, 2005 6:29 AM CDT God hears your prayers! Erik did not get a fever (which is inevitable when your counts drop as low as his!) God is so good. Nice to stay in bed and not run to the emergency room. This morning we're off to Fargo for the PET scan. Thursday, May 19, 2005 8:34 PM CDT Please pray specifically for no fever tonight!
Thursday, May 19, 2005 1:34 PM CDT Erik still feels really bad. His white cells are rock bottom (0.2, normal is 4 to 10), his absolute neutriphil count (ANC) is 180 (he couldn't leave the sterile environment during his bone marrow transplant until his ANC was 400)...so 180 is really dangerously low.
Thursday, May 19, 2005 8:17 AM CDT This is a photo of Erik's 20th birthday, March 19. Wednesday, May 18, 2005 9:13 AM CDT ERIK IS HOME!
Monday, May 16, 2005 11:31 AM CDT Pain is God's megaphone on a deaf world.
Sunday, May 15, 2005 8:45 PM CDT Wow, things vastly improved as the day went on. Erik was so sick this morning, and after adding a couple more anti-nausea drugs (he is now on six) he is doing much better with minimal icky side effects. He actually ate toast and drank a few ounces of cranberry juice, and had a few good naps. He just perked up enough to watch cartoons with Brandi, so I slipped out to post an update. Sunday, May 15, 2005 10:26 AM CDT Erik had an awful night and started the day vomiting. He isn't keeping anything down. He felt a teeny bit well enough to walk down the hall (mask and chemo and all) to check this site, but didn't last very long so he still hasn't seen the wonderful posts everyone has written, and apparently there is no way to get them printed out here so he can read them. When we get home he will be able to read everything and will be so encouraged by your love. I will put photos on the site as well. I was about to post the same verse that Kathy Conger put in her post! Isn't that a beautiful powerful scripture? Saturday, May 14, 2005 10:06 PM CDT Erik and Brandi are watching a funny show, and this is the most awake he has been all day. He is really queasy, and the meds they give him for nausea make him realy sleepy. I thought I would continue where I left off (see previous journal entry for the synopsis of all that has transpired up til now). Saturday, May 14, 2005 8:26 AM CDT Almighty God, You are faithful to renew Your mercies every morning. Friday, May 13, 2005 8:38 AM CDT Erik rested pretty well, and has a nice breakfast of pancakes and hashbrowns. He has more tests this morning then will start chemo. Paul and kids are coming up to see him this afternoon so Brandi and I can take a shower (I have been wearing the same clothes since Tuesday!) and move stuff out of the house she was watching into her apt, which she has until the end of this month. Thursday, May 12, 2005 10:18 PM CDT Today has been a very hard day. We waited until 1:30 to finally get the diagnosis. Erik has neuroblastoma again. One of the reasons it took so long (the Dr. originally told us we would probably know something 24 hours earlier) is because he made the pathologists triple check the diagnosis. Neuroblastoma nevers occurs this late (after 12 years of remission). He said Erik might be the only case of this ever happening. At 6 he had stage 4, where the tumor had spread from the adrenal gland to his bone marrow. His particular stage had this prognosis at that time: 95% of the children die before 5 years, and of the 5% left, some will relapse as late as 7 years. Later other cancers, such as leukemia or sarcomas can occur. Thursday, May 12, 2005 10:03 AM CDT Waiting for Dr. Kobrinsky to tell us the diagnosis.
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Well you can all whip out those calenders, because today history was made, today marks the day of yet another National Holiday. Please inform all of your co-workers and bosses, that today March 3, 2006 Erik Ludwinski got his HICKMAN REMOVED for good!!! So on this day please feel free to go swimming, wrestle, take a shower without needing a ziploc bag, say goodbye to all saline and heparin sounding words. WE ARE FREE!!!!I had a dream and it came true, NO MORE HICKMAN!
It is true, those two little tubes who had grown quite attatched to Erik are now gone. Erik did great, all they did was numb the area and then the guy cut the little cuff that forms around the tubes inside and voila! Well, actually there was a little tugging and pulling and humming believe it or not. After the doc had cut the cuff, he told Erik to hum, and all of a sudden he just pulled it out. I guess the humming helps the jugular vein to close up after the tube gets pulled from it. Erik didn't even hardly flinch... the numbing part was the worse. He felt a little "weirded out" afterwards, explaining to me that he just had something pulled out of his chest and he didn't quite know what to do with that, he was just a little nervous. That feeling passed quickly though :) He just can't lift anything over five pounds or bend over for the next twenty four hours.
In other life changing events: Erik's fingernails continue to peel and molt. His hair is coming in quickly, especially his facial hair! He is even getting some chest hair in!! Which is rather funny because he never had any chest hair before he was diagnosed. ( Is it embarassing for men not to have chest hair?? Maybe I should scratch that part out....) ** Which is rather funny...because Erik had TONS of chest hair before and I find chest hair funny...** There we go.
Well, Erik also had a PET/CT scan today and a hearing test. The scan results will take a few days, but the hearing test we found out right away. Erik has high pitch hearing loss and before he said that it dropped off around 10,000 hertz and now it drops off around 1,000 hertz. So it seems that Erik may have lost a little more of his high pitch hearing, his low pitch hearing is fine, but those high pitches he can't hear at all. They didn't say anything about hearing aids or anything like that. Now I am going to have to work that much harder trying to prove my theories about selective hearing in men... now Erik has some hard evidence against that, hmmm...
The first round of Accutane formerly known as "The Impossible Pill Packet" is done! Erik actually isn't peeling too bad. As long as we always have chapstick with us, we will be ok. His ears are peeling a little more, his face occasionaly feels itchy, but nothing too annoying. Other than that there are no other affects. The twitch in my eye has stopped now that I don't have to open any more of those dreaded packets for another two weeks. They should get Lamaze classes for accutane openers!!
That is all for tonight everyone, Erik is doing wonderful soon we will be able to use the pool that is in our apartment complex!!!! WEEEEEEEEEEEEEEE
Love,
Brandi
Also thanks for writting the update for me--except there was one small error... you said that I had 2 NB cells per million, when in reality, what they exactly told me was that 1 cell out of 500,000 didn't test negative OR positive. It's not a neuroblastoma cell, it's just some wierd cell that showed up on one of their numerous tests. None of the doctors were worried.
I have a really buisy couple of days ahead. I got the MIBG scan cancelled, but there is still a PET/CT, bone marrow, echocardiogram, and a hearing test. Maybe they'll let me relax some day...
My birthday's comming up pretty soon! March 19th, and I'm hoping to find a lasertag place around here. Havn't done that in a long time.
One more thing... I don't know if I've mentioned it yet, but my finger nails are peeling... from the back. It's wierd and annoying. Especially when you can't find fingernail clippers.
Day 100 or so…
I think I got permission to update this for them since they won’t have internet until tomorrow, right Erik?
Mission accomplished: Their new apartment is about 15 minutes from U of MN hospital (with no traffic) right near the Mall of America. Nice place! Karl and I enjoyed moving them in. The move was easy, except for the part about the three-mile-long hallway we had to carry everything through, and the fact it is upstairs. They are still ecstatically happy, and got the futon traded for one with a left AND right arm.
The futon is also their bed. No chairs, not even at the tiny computer desk. No table and chairs in the tiny kitchen. Just a futon. Ah, the joys of newlywed living!
Medical news: well the continued appointments just put a cramp in their style! Erik had counts done on Monday (which were good but he doesn’t know what they were, but he did have to have another GCSF shot since the white cells were a bit low) and he was supposed to have another MIBG scan today, but Brandi and Erik reminded them that he has NEVER had a positive MIBG scan, so this might just be a waste of perfectly good radioactive meds. So Dr Verneris agreed to skip it.
Erik gets his central line removed this Friday, and has another bone marrow biopsy next Monday.
They finally received the results of the immunocytology test ICC (sensitive bone marrow aspirate test) from Los Angeles--CHLA Neuroblastoma Reference Lab—that was performed a month ago. It came back with two NB cells per million.
Zero is better, but 2 isn’t much. Let’s hope the accutane takes care of it, and that his next test is clear of NB.
Erik will see his BMT doc Dr Verneris on March 13 to hear the results of the bone marrow next week, and at that point will be turned over to a pediatric oncologist for follow-up, instead of going to the BMT clinic. I have my preferences for the doc who will follow him, and I hope I get my wish! U of MN has a very good long term effects clinic, and they have a database of over 14,000 ped cancer survivors they continually study for long-term effects.
Other than getting settled in, they are very happy to be moving on to another chapter in their married life! They were at the U of MN transplant apartment for 4 months!
Praise God for His goodness to them!
Love to you all!
Donna
I mentioned earlier that we had some concerns about the accutane and it's ties with depression. Well, we discovered the real source--the pills' package is even more difficult to open than CD or DVD shrinkwrap. It's a new form of mortal-resistant packaging. A baby could use this as a rattle. It also has written all over the box, and every single pill dispenser that the person taking the medication should NOT get pregnant... boy this really screws up my plans.... ;)
Oh yeah, and request some video game you would like to hear a remixed soundtrack from. PEACE!!!
Brandi and I have both been really excited about decorating our new apartment! We're kinda going with a African/Japanese/Asian theme... due to the loads of cool ethnic stuff available at Target and Wal Mart. I wish we had a hard wood floor, though. I really liked these tall glass vases that we found, but they won't work on carpet. The base is really narrow.
We'll post some pictures as soon as we can... hope you like the decorations!
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Ok, I know it's not Hanukuh, but Adam Sandler's Hanukuh Song is hilarious! You might have heard him perform it on Saturday Night Live. Mozeltov, Capitain Kirk!
Well, I have not been the "updater" in awhile but I am back at least for tonight. Erik is eating something in the kitchen... probably the last of the cupboard doors and hinges, his appetite is DEFINATELY in tact.
All is going good for me, thank you so much for your sweet concerns.. I haven't had any troubling pains for almost a week now, God must be taking care of it... probably because he knows that not much will get done at the hospital too fast, I guess that is the price you pay for being at a HUGE teaching hospital.
A bit of exciting news for Erik and I... We will soon be moving!!!! We found a nice little studio apartment in Bloomington that is soooo nice!!! It is only three miles from the Cosmetology school that I want to go to and... only about five minutes from the Mall of America! The place is wonderful, there is a million dollar clubhouse that has an indoor pool, hot tub <--Erik's personal favorite feature :), rock climbing wall, billards room, indoor putting/driving range, huge party room, raquetball room, all these A-M-A-Z-I-N-G features!! I have been in giggly city since we looked at it and decided on it. We sign our lease on Friday, Feburary 24!! Erik and I have a busy week this week packing up stuff. Although if it was left up to Erik he would prefer to go out and find a large washing machine box and run through the apartment with one arm sweeping everything into it... fast and effective I am sure, but it may help to 'organize' a little :) Our first "real" apartment as a married couple! We are rounding four months here soon!(giggle giggle smoochie smoochie)
Erik has started his accutane, which is going great..no dry skin or upside down frowns :) Four pills twice a day, on for two weeks off for weeks. His counts are a climbin' we are spacing our appointments now every two weeks. Still no results on the Childrens LA test results but we should know soon. (GRRRRR)
Well, I think that is all for tonight's report, I have been trying for the last few weeks to get Erik on a earlier sleep schedule... but I must need more wife senority points to win that battle... oh well, love perseveres right? <3
Love y'all
Brandi
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Hey Randy and Nicole and the workers of Guida Masonry, cute little story....
A few days ago Erik and I were in the living room watching TV and all of a sudden Erik yelps out "GLEN!!!" I look over and he has this look of discovery/relief on his face. Puzzled, I mumble "Glen??"... Erik says " That is the 'other guys' name...it is Glen!!!" He was so cute, it is hard to portray it through typing, but he was so proud of himself for remembering. He wanted me to let you know that he now knows the 'other guys' name. GLEN.
Well everybody, there is not too much new to report. My counts are going up--platelets are almost normal! We won't get to hear anything new about Brandi till March... Dr. V said I don't really need to take up his precious time anymore... just one more visit with him in two weeks. I'm starting on the accutane (cis retnoic acid) tomorrow, even though we still haven't heard from LA children's hospital.
Brandi and I are scouting out apartments in the Bloomington area. She found a really nice Paul Mitchell cosmetology school over there, and I support her 100ercent in her hair persuits, even though it means my world is going to be senior prom for the rest of my life. Hey--I'll never have shaggy hair again... and we'll cut Karl's hair for free... any time he wants...... or even if he doesn't want it. Won't that be nice Mom? All Brandi's got to work with on me is peach fuzz so far, but it's coming in fast.
Sorry about the mix-up, Nicole! You're guestbook entry said Randal and Nicole Guida, and for some reason I figured Randi was the video gamer between you two! Ooops! Hope the guys get a good laugh out of that message--I try my hardest to remember names, but even Brandi's name eluded me for months after I met her... bad huh? I remember the face though. Hope everything is going well!
The endoscopy was clear. It showed no infection or ulcer, but looked like there was some damage from acid reflux. The ultrasound was also normal. They sent us back a letter that said she has none of this and none of that--the list was really long, and gave all the measurements of her spleen, kidneys, and bile duct (gall bladder). Thought I'd spare you the details... Brandi is going to stay on the anti-acid pills for a while. We saw a urologist, and he thought it might be kidney stones, so we got a CT scan and are waiting for the results.
I went a week without clinic, so tomorrow we will see how my counts are doing. We also get to talk to Dr. V again and see when I get to have my hickmen out... won't miss that thing! And bum-budda-bum-bum-BUM! We should have the results from the childrens' clinic in LA by then for all you anxiously waiting for that... (ie. MOM). ;-)
You know, pretty soon there isn't going to be much at all to write about me, what with the two week vacations from the clinic and all.... I'll update everything I can about Brandi's condition, but I also thought this would be a good place to announce how Mom's foray into the world of reserch and writing about Neuroblastoma is coming along. I think it's pretty cool she's going to conferences in Chicago and writing online manuals for parents of patients (remember this is a children's cancer). Or I could just state my thoughts about the universe and all it's mysteries... nah! I'll make this site into an online music request site. Introducing... DJ ECHOKNIGHT!!!
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Hey boss! Got your PacMan techno beat playing! Congrats on the new baby on the way!!! Lucky no. 6, huh? Man, are you the family man! Glad to hear business is rolling along. Jordan and that other dude still around? I miss them too. Take it easy!
Ashlee-- your Kirby song is next... don't know why I should play it after you dragged me out to that international night at your college, and made me sit all by myself for hours on end... Just kidding! I had a lot of fun there and got my ethnic dose for the week. Will do again!
I can't find the latest counts, but the ones from Jan 30 were:
White cells: 3.0
Hemoglobin: 9.6
Platelets: 79000
Going down a little bit, but Dr. Verneris says that's still expected. We also talked about a couple of other things... such as it looks like I won't be partying on my 21st birthday, which is March 19th. I mean, who is designated driver on their own 21st birthday!? Oh well... I guess it's a good thing I'm not a heavy drinker... which would destroy the point of 'drinking on my 21st birthday' anyways... whatever.
We also talked about this new stuff--Accutane, which is just a very strong acne medicine that I guess helps prevent Neuroblastoma. We got the medicine, but he wants to wait on the results of the tests that got sent to LA. We also asked him about the side affects, which include depression, and he said that the kids who take the medicine might just be depressed from having acne and other teen trauma issues... but just in case, if anyone wants to donate a shoulder for me to cry on, leave a note in the guestbook.
Now, some really good news: all test so far (BM biopsy, MIBG scan, PET/CT scan) all showed up negative. Which I have to say I'm not really surprised at all, because I trusted God and he does awesome things! I had a bone scan today, but the doctor didn't need any close-up pictures so I can assume he didn't find anything interesting.
Now we can focus on Brandi, who just had an endoscopy. I didn't show anything, but I'm starting to get the feeling it's gall stones or something like that. They keep saying it's acid reflux, but the medicine for that didn't do anything. She has a ultrasound tomorrow at 9am, so I'll keep you updated... faster this time.
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Now, it looks like we got some song requests! Yay!
Aunt Joan--hey! I got your Moon Patrol music! It might be hard to find stuff on Ocremix.org, but once you get the hang of it, there's a lot of good tunes. You know, I've never heard of Moon Patrol, but I like going back and playing old-school games, so I'm going to have to check it out!
Randy--what's up, boss? You'd be surprised how many remixes there are of the PacMan theme. All the game had was this little 5-second intro, then the constant CHOMP-CHOMP-CHOMP-CHOMP-CHOMP-CHOMP- of merry white-dot eating, but they managed to make a few songs out of it! I'll put one of my favorites on next--I think you'll like it!
I always wanted to be a DJ, but this is kind of a weird way to do it... oh well, I'm having fun!
Yesterday my counts were:
White cells: 3.9
Hemoglobin: 10.2
Platelets: 89000
Just in case you havn't guessed that music yet... it's the Super Mario Bros. theme song. Anybody out there have any requests for certain video games they would like to hear a remix to (by the way I don't personally mix the songs, they're on ocremix.org). If you do just put it in the guestbook. Ocremix.org has just about every video game you can think of--and the classic games sound the best so... yeah, if you think of one just let me know.
Gotta go. I'm hungry!
Erik
Hi, I'm Erik Ludwinski along with my co-anchor, Brandi Ludwinski. Today a man killed five cows with only a miniature porcelain figure. Authorities say this may be the only recorded incident of a 'knick-knack patty whack'.
(Stolen from "Whose line is it anyways?" weeknights on ABC)
In other news, my counts are:
White cells: 3.6
Hemoglobin: 9.9
Platelets: 75000
Technically we went to clinic yesterday, as it is really late again… but hey, I worked out again! We still go at midnight so no one will see us. So much for our self-esteem. You know the real bad thing about staying up is though? If your days start to blend together, you don’t really know what day it is, and last night (Jan 23rd) Brandi and I got really freaked out for a second because we thought we missed clinic. She checked her cell phone and of course it said Jan 24th, but since it was night time, we automatically assumed it was the night of the 24th, but it was really just early in the morning of the 24th. Scared us for a minute though!
Also, a conversation took place a while back that Brandi and I are still laughing about—thought I should put it on the site. Here it goes (keep in mind, I’m a serious Star Wars freak):
Erik: “Do you want to watch the history of the lightsaber?”
Brandi: “Why would I want to watch the history of the lightsaber!? That would be like Martha Stewart saying, ‘Want to watch the history of the rolling pin?’.”
Erik: (scoffs) “The rolling pin isn’t the hallmark of the greatest movie saga ever made!”
Brandi: “But it is the hallmark of the greatest pie ever made!”
Hope you find that as amusing as we did!
Peace, Erik
Erik is feeling better today!! Yesterday he didn't get sick at all, just still some stomach pains, but today he says he feels good!!!
Last night Erik and I had a little work out date! We went to the work out center here at the apartment...Erik did the bikes and I ran on the treadmill. Erik had a GREAT 30 minute work out!! I was really suprised, but he did great though. Today we have a little city adventure planned...we are just going to go around the city and explore a few things:)
Well this is a short journal, but we have clinic tomorrow so we will report the numbers back. Hope you all have a great day!!
<3 Brandi :)
Well, today was something differant...Erik has felt sick all day. He woke up with a little stomach discomfort and it has just kept him in bed all day. He got sick a couple times, the poor guy. He says he feels comfortable right now, so hopefully he will stay that way. I hope he wakes up tomorrow and feels completely better. I just wish I knew what caused it, and hope it passes quickly. He is getting plenty of rest though, so I think it will. We had clinic yesterday and all was well there...
White Count was 4.6
Hemoglobin was 10.4
Platelets were 64,000!!
We don't have to go back until Tuesday...YAY! Erik just woke up a little and said he feels a little better. Whew! I tell ya, I didn't miss any of this sick stuff...I just feel so bad when he gets sick. He is such a fighter though, I really have no reason to worry. I don't know if any of you know this, but the name Erik means "Warrior", Paul and Donna sure gave him the right name! Good call on that one guys :)
As soon as Erik is feeling better Erik or I will have something on here, but until then NO WORRIES! He will be all better soon. The whole transplant process really flew by for me. I can't believe we are already on Day 64! Feburary 22 is his Day 100 (but who's counting;)) In fact, the last eight months have flown by, I just can't believe it. It seems like this whole time has just been on fast forward. You know when you get married they usually call it "settling down" but Erik and I have done all but that! That is okay though, if you ever ask my mother she will tell you that I never do anything slowly. I am sure I will understand what she means when we have kids of our own. :)
Well, I am going to check on Erik but I will update as soon as he is feeling better!!
Love, Hopes, and Prayers
Brandi Ludwinski<---- I am finally getting used to it... but I still giggle when I have to sign my name! :)
We made it to clinic Monday morning, though. Well, it was more like 1pm, but it sure felt like morning. I told Brandi I wanted to write an update, but then I took a nap and watched some movies, and BAM! There goes your whole day. If updates ever come late again, just remember it's probably Erik's fault. Well here are the results:
White cells 2.3
Hemoglobin 10.0
Platelets 60000
ANC .6
Don't worry about the ANC, all that means is I needed a little boost from my friend GCSF, a shot that I inject into the fatty part of my belly. It sends my white cells soaring and stimulates lots of other cell growth too, but URRGGHH it stings!!! I do it myself because that way it hurts the least.
You know the funny thing (and why I wanted to write this update) is that just before I had to shoot myself, I was reading an article in Reader's Digest about anorexia and cutting problem in kids. I think I kind of understand the anorexia part pretty well--kids who think they are too heavy starve themselves to death and throw up all their food to lose weight so they can feel more attractive. A disgusting habit no doubt, but one that almost seems to have a shred of reason behind it: they want to get thinner. Then there's the other part that I don't quite comprehend... CUTTING!?!?
Ok, they feel depressed and they can't find ANY other outlet besides butchering their own body. For some reason I couldn't help thinking about it while I tried to give my self the GCSF shot. Here I was, trying to shove a tiny little needle, one of the smallest needles I've ever seen (and believe me, I've seen a lot), a half inch into my skin and do you know what? IT WASN'T ONE BIT PLEASENT!!! I highly doubt that it would become any more pleasant if I were clinically depressed either. How can these people--KIDS even!--mutilate themselves this way? What happens to the mind when it forgets the simple pleasures a flower or big red rubber balls can offer, and chooses instead the sharp edge of a knife!? I'm not a psychologist. I have no idea.
Well, I guess that's all for the opinion section of my caringbridge update. If I win the lottery or meet any famous actors (both highly unlikely with my luck), you will all be the first to know.
Love you all, Erik
Well, we had to go to clinic yesterday to get counts done...and his platelets went from 54,000 to 59,000 all by themselves. You know in the beginning I was starting not to like these little guys...but now I think they are alright ;) Hemoglobin was 10.8 and White cell was down a little...2.8. NO TRANSFUSIONS!!
Sorry for the gap in updates, but there has just not been "news". He is doing great, eating alot...ALOT... He eats at least twice every hour, usually in small quantities. His energy is still on the climb, he gets better and better each day! We have been just hanging out having fum, we went on a little McDonalds date the other day, we went to Barnes and Noble and looked at books, got some coffee...it was really fun and cute! Tonight we are getting together with another couple we've known since high school, just to hang out, play some games. Erik and I also had a "Marital grocery shopping" trip. It is still so fun to think that we are a married couple cruising through the store buying groceries...it is not just a trip to the grocery store, it is a "Marital" trip. We are so corny...but I love it!! Like I said, we have just been kickin' back and enjoying each other and having fun! We go to clinic on Tuesday, and if everything looks good, we should be off 'till Friday I am guessing...the we will have the whole weekend free!! "Marital Dates" here we come!!!
*Merry No Transfusion Day!!! <--- AS of 1/15/06!!
Today we went back to clinic for a count check and guess what....(drum roll in background...the crowd falls eerily silent....the world stops turning...)
PLATELETS ARE GOING UP ALL ON THEIR OWN!! PLATELET COUNT OF 54,000 TODAY, NO TRANSFUSIONS...I REPEAT NO TRANSFUSIONS !!!!! (Crowd goes wild in an uproarious array of shouts and yells, drum roll turns into a full blown drum line and the world spins out of control!!!!)
Yeppers, Erik has not had a transfusion since Saturday (1/7), his platelets are FINALLY engrafting, and his white cell is going up on it's own. Hemoglobin was 10.8, which has been staying steady. Also another bit of exciting news is that Erik got taken off the IV bag food!!! He is really eating well and very frequently! His energy is coming back VERY quickly! We have went on 4 dates in the last week!!!! I cannot believe how well he is doing, we are almost back to our normal goofy giggly wacky selves!! Now all we need is for the platelets to get a little higher before we start wrestling and rough housing again :). Hopefully his platelets will just go nuts and we can hit some slopes before winter ends...I know two snowboards who are getting very very lonely....
Erik is doing WONDERFUL all of those prayers are working in ways that I can't even explain, NO WORRIES about anything, this boy is going to be JUST FINE!!!!!!
HAPPY PLATELET DAY!!! <---Official holiday
First of all, so sorry for the loooong gap in updates, the internet was down here in the Argyle house for the last few days.
Erik is doing really really great! We had a wonderful New Years together, a quiet night at home just us...as Erik mentioned there was hardly anyone around here so it was pretty funny when it was just us yelling at midnight :)
Erik and I had our very first date as a married couple the other day...we went to the movies to see Chronicles of Narnia which was a wonderful movie, and then we went out to Denny's and had a late night breakfast!! It was wonderful and Erik was feeling really really good the entire night! He even walked around the mall and never got sick!!! He really amazed me with how well he did. The rest of our days have been spent mostly by just hanging out here at home and watching movies, playing video games, getting somewhat of a sleep schedule back on track... and finally ENJOYING THE SWEET WONDERS OF A MARRIED LIFE!! We have been having so much fun. Actually Erik and I went back to Lake George on Thursday to see a friend of ours who is leaving for the Airforce on Tuesday. We stayed at his house Thursday night and had a wonderful time, there were a few other people there, so we just listened to music, played poker....I WON!! We stopped in Park Rapids on our way back to the cities and I got to see a bunch of my gal pals and we all went out to dinner...I will have to put a picture up of it sometime because Erik is sitting in the middle of five girls!! Ladies man he was :) I asked Erik before hand..I was like " Are you sure you want to hang out with all these giddy girls?? " He was all for it, and luckily he did come out alive and still sane!! It was the cutest thing ever...all of us were at Snyders and Erik said he wanted to go and grab some snacks for the ride home so he walked off and I was just standing there with my girlfriends chatting and all of a sudden I see this silk red rose come across my shoulder...I turned around and Erik was standing there with this rose and a piece of caramel!!!! What a sweetheart I married!!! I could not help but gloat a little bit...I have the BEST husband!!!
ON to the counts...
His platelets are holding a little bit more, they were up to 42 last week!!!! His white cell shot up to over 7 because of the GCSF that he got on Tuesday, his ANC had dropped (on tuesday) although his counts were pretty good, some of those neutrophils must have been hiding:) His hemoglobin is doing great...10.8 was the last one!! The nausea is almost gone, just a little in the mornings, but under control!
Well, I better get going, Erik and I have a "couch date" to watch Pirates of the Carribbean<---- Parts of this movie were filmed in ST. LUCIA!!! I never knew that! Thank you for all your prayers and I hope all of your 2006 year is going great so far...I know we are loving it!!!
Hope you all stayed up till midnight and made lots of noise and celebrated and sprayed fake champaign all over the place. It seemed like everyone here went home for the holidays, so there wasn't much noise... at all actually when the clock hit 12:00. We gave our own akward little "yay" and high fives, but it felt strange when no one else is doing it with you. The place is a ghost town.
It was nice to have the whole new years eve to our selves and not have to get a checkup. We wasted most of it sleeping though. I think I ended up sleeping a total of 12 hours--yes aparently it is possible. I woke up a few times though and attempted to get out of bed. I didn't work. It might have had something to do with staying up till 6 in the morning watching Brandi's DVD season of "House". An amazing show if you havn't seen it already. I don't think I'll be staying up that late again any time soon though. In the morning I got sick again. I don't go to easy on my body, do I?
At least I felt pretty good the rest of the day. I stopped my binge eating and settled for a bowl of blueberry yogurt for breakfast and a small plate of turkey, stuffing and corn for dinner. I think it's really working. Also, here's something for you to try: guava juice. The stuff is awesome. I've been drinking it constantly since we got it. That's not product placement--I really do like it.
So hope you all have a great new year and actually keep your new year's resolutions... I'm holding you accountable!
Love to you all, Erik
Actually I just threw up for the first time in 6 days. Thought I was completely better, chowing down on chocolate blueberry truffles, cheese tortillas with sour cream and salsa, beef stew, and drinking lots of pop all day. I think I created some kind of chemical warfare in my stomach and it finally blew up. Like 10 minutes ago.
I'm doing great now though. Well... my face is still a little swollen from all the blood rushing to my face. For a while there I thought my face was going to explode too. Had to keep my eyes tightly shut to fight the pressure, but you know what? I feel great now and kind of silly for eating all that crap.
Well, thats all. Hope I didn't ruin your dinner, merry Christmas, and a happy new year. I'm going to bed now.
Today was wonderful, we got to sleep in, hang out, not worry about what time we have to be at the BMT clinic...it was great! We do have to go tomorrow, but then we might be able to have THE ENTIRE WEEKEND OFF!
Erik and I went to Best Buy today, and Erik walked around for half an hour and didn't even feel that tired!!! He did great. He has been eating really good, mostly steak, eggs, steak and eggs...there is a little pattern here, but as long as he likes it I will cook it! His appetite is going up alot and so is his stomach capacity...every time he has been able to eat more and more! He is improving so rapidly....PRAISE GOD!! I cannot believe how wonderful God has been to us, it really is amazing!
Erik and I are going to enjoy the rest of our night off by watching movies, relaxing, and eating!! Thank you for all those prayers and praises!!!
First of all, Erik is doing GREAT! He is like a whole new person, he hasn't gotten sick in three days!!! We got out of the hospital Friday, December 23. We had to go to clinic on Christmas Eve, where our pastor from home and his daughter visited us, that was really nice to see them!! We went back to the apartment and while Erik took a little nap, I went to Cub Foods and got all the stuff to make Christmas cookies and STEAK<----This is what Erik wanted for Christmas dinner :).
The Miracle-->
Around five that night, Erik looked at me and said " Do you wanna drive home?" I was completely shocked! He must have said it three times before I was like " Are you serious?!?!" So in about a half an hour we packed up all the meds and stuff and hopped in the car and drove four hours to Erik's parents house!!! We got there around
10:00pm and spent some time with them, which was wonderful and great to visit, woke up in the morning and opened presents, then drove to my parents house and spent the rest of the day there. We didn't tell my parents that we were coming so it was wonderful to see the look on their faces!! We also had a bunch of family coming to our house so we got to suprise all of them!! Erik had called my mom when we were like 10 minutes from my house pretending to be at the apartment, so she was really shocked!!! Erik even got to eat some Christmas dinner!! It was so funny because at one point, all the wives were at the kitchen table chit chatting and giggling and all the husbands were on the couch watching the game. Both Erik and I laughed because we thought that it was so fun that we were part of the "Married crowd". It was the best Holiday blessing ever! Erik felt so good the entire time, I was just praising God the whole time! He got a little tired so he took a few naps, but other than that he didn't feel the slightest bit of sickness!!!! It was the best first Christmas ever! We left my parents house at four in the morning so we could get back for his 9:30 am appointment on Monday! He needed some platelets, they were down to 17,000 so he needed a little boost. Then today he got a blood transfusion because his hemoglobin was at 8.2 so that wasn't too bad. We will hopefully get a few days off of going to clinic if Erik's platelets will cooperate. Meanwhile Erik and I are FINALLY getting to enjoy each other, we have been able to cuddle up and watch movies, I am finally getting to cook for him, we are getting back to being silly and goofing around..aka tickling and laughing uncontrollably!!! I hope all of you had as wonderful of a Christmas as we did!! Hoping for a wonderful healthy year in 2006!!!
WE ARE HOOOOOOOOOME!!
Well, it feels WoNdErFuL to be back at the apartment again! We were so excited to know that we would be able to spend Christmas Day at the apartment instead of the hospital. Erik is still feeling great, a little sleepy though. He is getting food down, he ate some peaches last night and today he got 2 chicken nuggets down! I don't know if any of you had heard this story, but when Erik got out of transplant the first time('92), he ate 19 chicken nuggets!!! I have no idea how his little belly handled that. He is still on the TPN but at least he has a little bit of an apetite now though. He can hold down the food well too, he doesn't even feel that sick! His taste is back too!
His liver numbers continue to go down, and the fluid is almost all off of him. The doctors still don't know exactly what caused it, they are just thinking that he may have had an infection in there somewhere, but all the antibiotics took care of that! He did need platelets right before we left, they were down to 17 this morning! His hemoglobin is holding pretty steady though...9.1 so we should be able to make it through the holiday weekend without needing a transfusion. We have to be at clinic tomorrow early, just for labs though so hopefully it will be an "in and out" visit. His oxygen levels are back up to normal without the oxygen. His last chest x-ray looked good, most of the fluid was gone. He really is doing great. The doctors said he recovered wonderfully and that they were really happy with how his body responded so well to the diuretics. All he has to do now is catch up on some rest and regain his strength and he will be back to normal! Oh I cannot wait for him to finally feel great everyday!
I can't wait to give him his Christmas presents! I did manage to get out there and get him a few little somethings, I tried to get him the whole world, but as it turns out it is a hot ticket item for Christmas ;) I hope all of you have a wonderful Christmas/Holiday break! Lets hope for GOOD HEALTH FOR THE 2006 YEAR!! Happy Holidays!
I was really suprised today because one of the nurses used the "D" word....DISCHARGE!!!!!!!!
Erik is doing WONDERFUL! He has lost A LOT of the fluid that was retaining around his belly and lungs. He had a chest x-ray yesterday and it looked so much better! The fluid is starting to come off from around it. His liver is doing great, and he hasn't had a temperature in a long time! He was on oxygen and then they switched him to this thing called Bipap, which is a machine that gives him oxygen but also pushes air in when he breaths so his lungs are getting the maximum amount of air that they can have. Last night they lowered the oxygen percentage down. He was at fifty percent, but then they lowered him to thirty five percent, and his oxygen stats stayed up good so they lowered him to twenty five percent right before bed time. Twenty one percent is what room oxygen level is, so he is real close to not needing it at all! This morning they let him leave off the oxygen machine and his stats stayed up around ninety six percent, so he is doing GREAT! If he can get some food down today they are looking at letting us go home TOMORROW!!!! Erik said that he wanted peaches, so we are going to try those. They have been slowly switching his medications over to oral form and he has been doing good with those. They even said that the one anti-viral Acyclovir, which Erik had to take 5 times a day, might not even be needed this time. Which is truly a blessing because that was the one pill that when we were discharged from BMT was impossible to get in all five times.
His counts are GREAT as well, he hasn't needed blood or platelets for two days! His platelets are above 30 and his hemoglobin is above 10!! God really pulled us through this, after that prayer (about the 97 percent oxygen level) Erik just started improving pretty rapidly! I am so stunned about how well he is doing, and the best thing....We get to have Christmas at the apartment instead of at the hospital!!! Plus, his counts are high enough that he might even be able to get a kiss under the mistletoe!! (giggle giggle) Please PRAISE God for his wonderful miracles that he gave Erik and I. God is amazing and wonderful and we will be glorifying him on Christmas day!!
Happy Holidays to you all!! Also check out the NEW PHOTOS IN ALBUM!!
In other news:
Our dear friend Anna Getchell came by yesterday to visit Erik and I at the hospital. It was wonderful to see her.
PRAISES this time for God, prayers as well, but BRING ON THE PRAISES for the amazing person that has given life to the next amazing man...my husband!! ( Of almost 2 months!! Can you believe it?!?!)
Well, Erik had a busy morning, tests tests tests...all of which came back GREAT! First he had a Chest X-ray, show the fluid around the lungs isn't getting any worse, it is staying the same, so at least it is not getting worse. Then he had a special scan that looked more closely at how everything was flowing between his liver and gall bladder...that test too showed that everything was NORMAL and in good working function!!! Following that was an echocardiogram that checked the function of his heart...sometimes if the heart is not beating as strongly as it should, it can cause the very symptoms Erik is having (Fluid retention in abdominal wall, enlarged liver, elevated liver funcions..) but (drumroll playing) test shows...NORMAL!!! (Crowd rises and cheers!!) Also the BIG news of the day is that his ALT and AST <--Liver functions from previous journal entry> WENT DOWN TODAY..VERY GOOD NEWS! The doctors said that he is moving in the right direction although none of them have a clue exactly what is going on, their main thought now is some kind of infection somewhere. VOD has been ruled out!! Hepatitis as well along with any other liver complication (except for infection). Tomorrow they are going to take a little bit of the fluid from Erik's stomach and test it to see if there is anything going on in there. All is good for Today...PRAY PRAY PRAY!!!
Just to warn you, this is going to be a jam packed update...lots of stories!!
First of all lets start with the Medical Stuff...
Erik's belly is still retaining alot of fluid, but the Dieuretics are working, his belly is starting to feel a little bit more mushy ;) than tight and bloated. However, some of his liver functions are sky high! There are two functions that are really high and those are the AST and ALT. Both are enzymes found in the liver. Both of these counts are used to detect if there is liver damage, and if so what kind. The normal range for the AST is 0-55 Erik is in the 400's...the normal range for ALT is 0-77 and Erik is in the high 700's. Now, with the chemo that Erik got, there is a risk of VOD( Venoocclusive Disease) which is a disease of the liver. He had a ultra sound of his stomach the other day and one of the tests looked at the size of his liver and gall bladder, the other called a Pulse Wave Doppler looks at the flow of blood through the liver. With VOD, usually the vessels are blocked and blood flow is restricted through the liver. The ultrasound showed that Erik's liver and gall bladder were enlarged, so the report on that said "suggestive of VOD" but because the blood flow was normal, the report said "not suggestive". The doctors are of course still wandering what could have caused the fluid in the abdominal wall, but VOD is not on the top of the list, mostly because with VOD the blood flow is usually abnormal and there is pain where the liver is located, and Erik has not had any pain at all when they push on his stomach. Also VOD is usually accompanied by jaundice which is the yellow color of the eyes and skin that people get when their Bilirubin is high. Erik doesn't have that at all! That news was definately good to hear. He is still having some fluid retention, so they are going to do some viral tests tomorrow morning for Hepatitis. He has been feeling better and better each day, as I mentioned above, his stomach feels a lot less tight. His lungs sound clear and he can breath just fine, however because of the fluid, his oxygen levels were down around the 90ange so he is on oxygen but at a low level just to keep those up.
Now for the A-M-A-Z-I-N-G God stuff :)
Well, the other night after I got off the computers looking up various liver diseases and side effects I couldn't help but be a little worried( not scared..just worried) so I started praying for God to take all the demons that were trying to scare me away. As I sat in the room with Erik sleeping, I was watching his oxygen levels and the highest it was getting was 94or the past hour. I prayed to God that if everything was going to be okay and that if Erik did NOT have VOD that his oxygen level would go up to 97A little while later I looked over at his monitor and sure enough...97!! Also, this was another really cool "had to be from God" thing...Mine and Erik's lucky number is 19, and every hour Erik's oxygen levels are recorded on the machine. Well a few hours later I looked at the machine and at 19:00---> 97 Not only did it get up to 97 when I prayed for it but it got up to 97wice and was recorded at 19!!!! I had the most amazing feeling rush through me, it was like God gave me a high five!! So I just wanted to end this update with the amazing power of God and set all your hearts at rest! The begining sounds scary but the end makes up for it and lets ya know that it will all be GREAT! God Bless, Merry Christmas, Happy Hannakuh, Happy Kwanza, Happy Holidays!!! Keep up the prayers, as you can see they are CLEARLY working!!!!
So far they have not come back with anything, although blood cultures take a few days. His chest x-ray came back clear (whew!). However they did do a CT scan today because Erik's belly is really really tight and bloated. They didn't really know what could be causing it, so they wanted to make sure that there wasn't any bleeding going on there. His hemoglobin was at 6.7 the other day but then it was back up to 9.0 today. On top of the 9.0 he got another blood transfusion, so hopefully it will be higher tomorrow. He got sick a few times today, but it wasn't because he was so nauseated, it was just because he wanted to get that bile out of his stomach. He was feeling pretty yucky most of today, mostly because his belly is so tight and bloated he felt uncomfortable. No more bloody noses!! His platelets are still low, 15 was the last I heard, but they have been checking them twice a day. I was praying tonight and I prayed that God would just heal Erik overnight so that in the morning his belly would feel better and he wouldn't be so tired. After I got done praying I was filled with the feeling of complete happiness and excitement! I really think that tomorrow Erik will be feeling so much better. I trust God so much that I don't even have to worry, I think that is what has made this whole process so much less stressful. I don't think that I have felt overwhelmed with stress at all through this entire transplant...of course there are many times when I get worried about him just because I wish he was better but never scared that he wasn't going to make it. I know that God is going to heal him and that in ten years he will still be cancer free and we will have little ones running around!! Please continue to pray for Erik, the more prayer the louder they are! Thanks so much for all your effor, all those hours spent praying really will pay off! Erik and I have talked so much about the stories in the bible where Jesus went to towns and where there were people who believed and had faith, he performed miracles, but where people didn't believe, he did not perform as many miracles. I know that there are so many of us that believe and have such strong faith that he will perform a miracle!!
God Bless and Happy Holidays!!
Well, Erik got a fever around six this morning, so we are back at the hospital. It is actually comforting for me for us to be here because at least now I know that he will be getting all of his meds in. That was the only stressful part so far, was trying to tell this poor boy that he had to take his meds. They have done a ton of blood cultures and tests and a chest x-ray so hopefully we can find out where his infection is. His temperature was 101.5 this morning and now it is down to 100.0, so it is slowly dropping. His hemoglobin took a nasty dive, 8.4 yesterday to a 7.2 today! He is of course getting blood and platelets. The platelets however look like they could be coming around. For the last few days even with transfusions his platelets were at 12, yesterday they were 15 and today they were 14, so they aren't dropping as much and the transfusions are making a teeny differance.Yesterday was the first day taht we went without a nose bleed, so that was really nice. White cell is down to 1.6 but I suppose they are off fighting something. He is feeling a little better right now, but he was pretty sick this morning and most of today. His taste is coming back, so that is really good. Hopefully we will hear back about the chest x-ray soon, although I don't think anything is wrong. The pentamadine ( a prevenative inhalant that protects against pnemonia) can cause him to cough, and even though he got it almost a week ago, he still has the cough. He did perk up a little bit a while ago, so I hope he starts feeling better. I keep praying so hard everyday, I know God will start healing him soon. Please pray for all of his tests to come back okay and that there won't be any major infections. Thanks so much!!
Well, last night was a very looooong night. In fact most of yesterday was loooong. Erik felt sick pretty much the whole day, he got sick three or four times. His hemoglobin dropped a little, but not enough for a transfusion, so that was good. His platelets were still at 12,000 yesterday but they were 15,000 today so YAY PLATELETS!! Even with transfusions they weren't going up untill today, so lets just keep hoping and praying for those! Today was a little better, he is not getting sick as much, and he got almost all of his medications down. Well, he didn't get the anti-viral acyclovoir down yet, but he is suppose to take that 5 times a day!! The most we have ever got in him was 3 times. It is so hard to tell him that he has to take his meds. Especially because he will say "Just give me a minute to settle my stomach.." A minute really means half the night, so it really is quite the battle. The jaws theme music really is playing loudly. I hope he still loves me after this :) Hee Hee. Sorry this update is so short, but I am going to go check on him and discuss the meds...(eye twitches) :)
Keep praying for those platelets and that Erik will start to feel better. Thanks so much is really is appreciated!
Happy Holidays!
Hey everyone!
Well, things have settled down a little now, no more nightly visits from nurses or home infusion, which is really nice because they have to call and leave all these messages to try and figure out when you are going to be home and when we are in clinic everyday, most of the time we really have no idea how long we are going to be there. Although going in on the weekends is nice, there is hardly anybody there, so things go pretty quickly, Erik got platelets and GCSF and we were outta there in an hour and a half! Then we came home and Erik slept the better part of the day, the Benedryl makes his sooo sleepy, plus he needs his rest so those counts can grow! I got to play housewife today, and cleaned the apartment, did the laundry and the dishes...but sadly I didn't have a meal to cook for my more than deserving husband, so I whipped up a mean bowl of ice cream :)! I went and got some movies and a ice cream cake from DQ for tomorrow-->IT IS MY BIRTHDAY!! Erik and I have a nice little day planned, first we have to go to clinic and get platelets in the morning, and then when we get home we are just going to kick back and relax watch some movies and christmas shows, eat ice cream cake and enjoy each other! I told Erik all I wanted for my birthday was for him to be home and I couldn't be happier! I can't wait to just snuggle up and watch some good laughing movies, also we are going to decorate the mini Christmas tree that we have, I went and bought a mini light set and mini candy canes for it! Erik and I are so excited for Chirstmas, Erik is even making some christmas music! Can't wait for our first Christmas together!!
Erik's taste is slowly coming back, I went and got more juice today and we had yet another tasting, he said that he can taste things a little bit more so that is really good. Today when we got his counts, his white count went up a teeny bit, yesterday is was 2.0 and today it was 2.3 before the GCSF so tomorrow his counts should be good. Lets hope for those platelets to find their place soon. No nosebleeds though so as long as the ones that are there can keep his body happy enough. Hopefully Erik's taste will be back by Christmas, I would feel bad if he missed Thanksgiving and Christmas meals :(
Well, I am going to go check on the sleeping handsomeness and see if I can get him to take some of his medications...("Jaws" theme playing in background) Please Pray for his counts and no fevers (which he has not had yet...)!
God Bless us everyone!! -- Tiny Tim
Sorry for the delay again in the updates, it has been a very busy last couple of days. Erik was discharged from the hospital and did pretty good the first night. He said that he felt so relaxed--a feeling he hasn't had in a while. He looked so comfy sitting in the recliner chair with the remote in his hand. ( I told him that he could have the remote this time..sort of a "coming home" gift :) j/k!
He got a nosebleed that wasn't too bad that night, as I mentioned his platelets are being soo stubborn. In the morning, he got sick twice which caused the nosebleed to get worse, but luckily we were going to clinic, so he got platelets and it stopped. He did good last night, he didn't get sick at all, and HE GOT HIS MEDS DOWN!! Believe it or not, this was actually quite the little celebration for us, the night before, he got sick just trying to get them down. He doesn't have very many, only three meds. They are all really important to get down though and the one he has to take 5 times a day! Luckily we figured out the perfect solution to this problem...the ol' crush it and put it in ice cream...he can't even taste it! Speaking of tastes, his taste is coming back a little bit..he likes mint chip ice cream b/c he can actually taste it. He likes smelling everything because it smells normal, so every time I sit down with something he asks to smell it, it is actually pretty cute the little grin he gets on his face. They sent us home on the IV bag food (TPN) so I had to go to a class on how to do that and then for two nights a nurse came to the apartment, one night for me to watch, and one night for me to do it. It really is a piece of cake, and it is pretty fun. In our fridge we have all these vials of stuff because for the TPN you have to mix the multi-vitamins and add it to the food, so I get to be a pharmacist and a nurse!!
Today was great! Erik didn't get sick at all, and he got his meds down, the only problem that we have is it is hard for him to get them down in the morning because he doesn't feel like eating ice cream just yet, so we are still working on getting ALL of them down. He got platelets again today, but no nosebleed since the other day. He was feeling really good when we got home from clinic so I had a quick chance to run out and grocery shop a little...we now have more juices and yogurts than most small town stores, since some juices taste good and some don't, I just bought them all and Erik and I sat down with some glasses and had a juice tasting, slightly less intoxicating as wine, but still fun! :) He is doing so good, and I am so proud of him, every time he gets that ice cream down and gives me a high five, I get these little butterflies in my stomach. I can't wait to have my honey back to normal!! Thanks for all those prayers and we just pray for a healing mouth and high counts!!
P.S His counts are good, Whites are 2.8 Hemoglobin is 10.4 and those stinkin' Platelets were at 15 this morning, so with the transfusion they should be a little higher.
Well, after all those wonderful, amazing prayers...ERIK GETS TO GO HOME!!!!!(The apartment)
Erik is doing great! He even got some more food down today, although he pretty much has to force himself because everything taste bad. He really is doing a good job of it though, he makes me laugh so much! I went back to the apartment today to clean up a little and I couldn't believe how good God has been to us, he really has blessed our lives, relationship, and marriage. I was jumping all over the place being so giddy because I couldn't believe it! Erik is so excited to get home, it will be sooo nice being just him and me for awhile with no docs and nurses. Even though we will have to go to clinic everyday, we will still have nights together to just relax, kick back, and enjoy being married...outside of the hospital :)
Erik's white cell dropped some, it is down from 3.4 to 2.0, which is perfectly normal, his counts will bounce around for a little while. His platelets are being so darn stubborn, he has gotten transfusions almost everyday. His platelet counts has to be over 40,000 before he can go without transfusions, but his hemoglobin has been very good to us. He has only had a few red cell transfusions, and that was only in the begining. White cells are just being momentarily tempermental, but hopefully that should pass :) His nausea is doing good, as before he still gets little waves, but he is able to control it. His mucositis is the only problem right now, all the sores are gone, and his throat doesn't hurt at all, but the taste and slimy-ness is not fun. Erik wanted to ask for prayers about his mouth, and that his taste buds will come around. I told him he probably just has "baby buds" that can't taste very good. Well, I better get going...Erik and I have a date @ 7:00 to watch the 3-hour super block of "Whose Line is it Anyway". It is really fun to know that we can still have dates, even though we are in the hospital! Thanks for all the prayers, PRAISE GOD!!!!
Erik is still doing great! His white cells are still climbing, they are up to 3.4!! Getting close to normal range, and the docs say that he should be out sometime in the early days of this week! I can't wait for us to be at the apartment! They stopped the Zofran yesterday and he didn't get sick at all, he even got some food down! He had vegetable beef soup and it actually tasted good to him. Almost everything tastes weird to him because of the mucositis, but the soup went down good! He really is doing wonderful and is really anxious to get out, who could blame him? :) The doctors are really pleased with how well Erik is doing! Erik can't wait for Christmas time, we even have a little Christmas tree in the apartment! God has really been blessing us these last few days, Erik is doing great and feeling good, everything is going good. Erik and I were up until 4:30 this morning just talking and laughing and goofing around, all the night nurses think we are crazy and all the day nurses think we are bums :) We kind of have our days and nights mixed up though, funny how that happens. Well, I am going to get back to that wonderful husband of mine, keep up all the great wonderful and much appreciated prayers!! They really are working miracles!!! God Bless!!!
Thank you all who prayed for us...IT WORKED!! Erik didn't get sick anymore yesterday, or at all today! His white cell doubled from 1.3 to 2.8!!!! His pancreas test came back normal and he didn't even get any more anti-nausea drugs!! He ate some bread and drank some of that magic green tea! I am sorry, all of these sentances have exclamation points after them, but I am so excited to see him better, and so excited to say that GOD DID IT ALL!! I prayed all last night that Erik would not get sick any more and that he would do great today and, God answered my prayer and all of yours! We really will be outta here in no time! It is amazing that God can turn it all around in such a short period of time! Again, Erik is doing wonderul, we stayed up until 4 am because we were laughing and having so much fun! Erik got to sleep in this morning and got plenty of rest! We have telling every one that God is doing this amazing job, Erik even wanted to ask the doctors if he could just get unhooked from all the meds, but they ended up just disconnecting the morphin and lowering the IV bag food, and skipping all the other anti-nausea drugs, so he is just on the Zofran. He still gets his anti-biotics so that it can keep away any infection, but he really is doing GREAT! Thanks so much for all of those prayers! It worked and it will keep working. YAY GOD!
Erik and I would like to ask you all for a prayer today. Erik has been getting pretty sick the last two nights, it may be because the Zofran dose got turned down, but just to be on the safe side, the doctors want to check for pancreatitis(inflammation of the pancreas) because that can cause violent vomiting, which Erik has been having. He got sick this morning around 5 am, but he doing pretty good now, he just said that he has to rest. They are going to give him some more anti-nausea drugs to keep any nausea under control. So, Erik and I would like you to pray for the nausea to go away and for his counts to keep on rising. Also that the panreatitis test comes back negative. I know how much all of you have been praying for us and we appreciate it so much. Please just say a extra prayer for him for the next few days. It was really hard to see him go from feeling amazing to being sick again. He told me not to worry, so I am just trusting God and it is really working, he does feel alot better than this morning. His white cell count went from .8 to 1.3!!! So his counts are coming in, he still needs some platelets, but they are doing better every day. Thank all of you so much! God is doing amazing things here in Minneapolis, as long as we keep on praying and trusting I have no doubt that Erik will be all better soon! God is A-M-A-Z-I-N-G!!!!
Sorry about the gap in updates, Erik told me that he wanted to do the very next update, but then his computer crashed, and the ones at the apartment house weren't working. Erik does really want to do the update but I told him I had to write something before people started to worry. :)
Erik has been doing GREAT!! His whites went from .3 to .8 in one day!! He ate food for the first time last night...his choice of food...Ramen Noodles! He drank mostly the broth, but did get some noodles down. They have lowered his Zofran dose, however he did get sick last night...not because of the food though, he was doing his mouth care and accidently swallowed some of it, so he said it just triggered something. He spent the rest of the night sleeping, which he needed. The past few days he was feeling AMAZING<--(this is not a strong enough word...) and so he had been up alot. He is feeling pretty good today, just resting and he wants more Ramen noodles, so I am going to make his some. I cannot tell any of you how amazing the gift of prayer is, God has truly showed through these last few days, you can walk into our room and just feel him there! Erik's mouth is almost healed, his throat is a little more sore from getting sick, but not too bad. One of the nurses came in yesterday and Erik and I were laughing and cuddling and she said that we made her day because we were so happy!! Speaking of our room, we got moved up to 5B now b/c they needed the bed of 4B, which is okay because 5B is the childrens center and so it is a really nice change of scenery! Plus, we have a lot bigger room!!! Well, I would love to go on and on, but Erik wants those noodles :) He is truly the man of my dreams and I can't wait for him to get allllllllllllll better! We trust God with all our hearts and I know that we will never have to worry about cancer again!!!
Erik's white cell is up to .2!!! Yay! He is still doing amazing, he feels so much better and his throat is healing really good. Still not ready for food yet, but he can swallow a little now. He has had a few waves of nausea because when he does swallow it has some of the yucky stuff from the sores in there and so that upsets his stomach a little. It is usually just a few minutes of nausea and then it goes away. They are taking him off one of the antibiotics so that is encouraging. We have definately filled in for the "lost days" of no talking. Erik and I have had so many wonderful conversations and laughs I am so glad to be able to do that again. I even get to hug him now! The doctors are still really impressed with how well Erik has done through the process. All of his counts and organ functions are normal, he is feeling really upbeat, and hopes to be out of the hospital by my birthday!(Dec. 11)
He really does feel 110% better than what he did last week. Everyday he keeps feeling better and better, soon he will be back to normal! Erik wants to post an update soon, but something happened to the IP address(I don't even know what that is..) which somehow connects the computer to the internet, so we have to have someone come in a fix it..so hopefully on Monday you can expect a report from the wonderful man I like to call...MY HUSBAND!!! Thanks so much for all of your support and hope all of you had a wonderful Thanksgiving Break! :)
The triptophane kicked in from all the delicious turkey and fixin's my parents made!!! Which by the way Erik got a teeny taste of, he ate some cranberry sauce and gravy!!! Attempted the stuffing, but that was a little too hard to get down his still sore throat. He is doing AMAZING!! He has had a complete turn around in the last few days, he even felt up to having my parents come visit him for a little bit! He also willingly went for a walk around the hospital floor, which is quite a ways. He has his glowing spirit back and wants to be at the apartment soon. He asked my parents to stay through the weekend because he thought he would be well enough to go back to the apartment. If only his white cells had that much ambition. :) He does however have a white cell count, it was .1 this morining, So we should be seeing that throat heal soon! His attitude is wonderful as usual, even the nurses were commenting about how "perky" he was. We were able to talk for a long time and laugh and giggle, which we haven't been able to do for almost a week! His nausea is under control, they even lowered the Zofran dose. I can't believe how good he is feeling, it is nice to have him back :) As for the Thanksgiving Dinner, we have plenty of left-overs waiting for him when he gets out! My mom cooked for an army of 100 and there was only five of us...she said it was because Erik needed to gain that weight back! So his is in the freezer portioned off...so there are 95 ziploc containers in there. Hope he has an appetite! All is well and wonderful here, hope all of you had a wonderful Thanksgiving. Our first one as a married couple was everything we could have hoped for. Next year I am cooking for 100, so hope to see you there :)
Well, we have yet another day of fevers and transfusions. Erik will be getting platelets today because he got another nosebleed early this morning that wouldn’t stop. He is also getting his first blood transfusion right now actually. He is doing pretty good, he is fairly tired because he didn’t get much sleep last night with the nosebleed. His mouth is still pretty sore, however, he did perk up a little last night and I actually got to talk with him. (More than a few words that is..) It was really nice to see him perked up, even if it was for only a few minutes. He is being really strong and attitude wise is doing great! I even got to hear him laugh!! He hasn’t been able to smile because of his mouth, but he did yesterday! He really is the most wonderful man ever :)
My parents are coming down today to cook Thanksgiving food for us, sadly however Erik won’t be able to eat any of it right now, but soon hopefully. Once his mouth heals I think he will be a lot better. Well, that is all to report for today, please continue to pray for Judge and Anna. www.caringbridge.com/mn/getchell Thank you so much!
The problem that we are having now is that his mouth is really really sore. He has the mouth sores, although his mouth doesn’t have any open sores or bumps, his mouth is pretty swollen inside and he can’t talk very much because it hurts his throat. So we need some prayers on that, the nurse said sometimes the soreness can go away by morning and sometimes is can last for weeks…so just prayers that it goes away quickly. He is getting a platelet transfusion tonight, his platelets were only 12,000!! He got a bloody nose tonight and it wouldn’t stop, the nurse said that they usually transfuse at 10,000 but because the nose bleed wouldn’t stop they would do it tonight. He will probably need another tomorrow, transfusions don’t bump the counts up much. He has a slight temperature, his temp was 100.2, but the only way to medicate him for the fever is liquid Tylenol, but his throat is so sore that he doesn’t want to swallow anything. They don’t start a new anti-biotic until the temp is 100.5. For some reason tonight he has been so close to the guidelines…but just a few numbers away. I think God is watching over him and I think that he will be good by tomorrow. Please pray for us, that he doesn’t get an infection, that his platelets come up, and that his mouth sores go away. Thank you so much for your prayers, they are working!!!
I am sorry, this web page keeps messing up, one minute the update will be there and then it won't be. Donna, you are not going crazy I assure you :) Today was Erik's last day of chemo!!!! He is doing pretty good today. He did get sick again this afternoon, but then he felt really good for a little while. I just got back from the apartment, I had to do laundry because since Erik has to shower alot, he has to change his clothes each time, so he is going through them very quickly! He is resting now and feels "okay". They were going to start the IV food today just so they can give him a few extra calories. He can still eat whatever he wants while he is on it too.
Yesterday the Chaplin came to see us and before Erik's transplant she is going to come and do a blessing and prayer. Erik and I both thought that was really cool. Erik has a day to rest tomorrow before he gets his stem cells back. That will be really nice, hopefully he won't feel sick at all and he can just enjoy his little break. His attitude is still holding strong though. I cannot even begin to tell you how all of the prayers have been helping. The doctors and nurses are all so amazed at how well he is doing, the expected him to be sick A LOT more than this. When you put God and Erik's spirit together, he can overcome anything!
Erik was diagnosed exactly six months and one day ago. Hard to believe it has been that long, but in another six months, Erik will be all better and we will be enjoying our six month anniversary of marriage!! Every night Erik and I pray together, and every night I go to sleep having the peace of mind that God is going to take care of Erik and everything will be just fine. Thank all of you for your prayers, they are DEFINITELY working!
Erik was diagnosed exactly six months and one day ago. Hard to believe it has been that long, but in another six months, Erik will be all better and we will be enjoying our six month anniversary of marriage!! Every night Erik and I pray together, and every night I go to sleep having the peace of mind that God is going to take care of Erik and everything will be just fine. Thank all of you for your prayers, they are DEFINITELY working!
Today marks TWO WEEKS OF MARRIAGE!!! I am still completely in awe of the fact that we are married!! We have our wedding photo sitting on top of the vcr in the room, so all the nurses keep commenting on it! Plus, it is right in front of Erik, so if I am ever away, he can think about me ;).
Well, this was a short entry, but like I said, today was pretty uneventful. Hope to report the same good news tomorrow!
Erik started his chemo today, and he is doing AMAZING! Hardly any sickness at all! There was a few times where he felt just a little "woozy"<--- word that he used :)
The chemo that he will be getting for the next couple days is Busulfan. They started him on anti-nausea drugs last night when we were admitted, so he is well medicated. Actually he is getting the Zofran(anti-nausea)constantly through a drip. It really helps alot I think, but Erik has informed me that he thinks green tea has magic in it and so I should just give him that alot. We went out to a chinease restaurant last night for one last "outing" and they brought green tea to the table. Erik drank like four glasses of it and was hooked:). Today I went up to the cafateria to get Erik some lunch and they happen to have packets of green tea so I picked some up. Earlier tonight Erik said he felt a little nauseated, so I made him so tea... and sure enough, he felt all better!! Now hopefully we can just keep this up for the next couple weeks. His appetite is still very much in tact, he had a huge plate of turkey, mashed potatoes, stuffing, and corn, and he nibbled all day. I am so happy that I married somebody famous...HE-MAN!! We have named our hospital room " The honeymoon suite" and one of the nurses saw that I had wrote it on the board and told me about this closet that they have on the pediatric side that has paint for the windows and art stuff, so I can decorate the room!! I am having a blast here! Everyone is so sweet and nice! I really feel confident that everything is going to go just fine through transplant. God is going to take care of us and in four weeks, Erik will be doing GREAT! I have never ever felt "scared" through this whole process, Erik has an amazing attitude, I wish all of you could see how great he is every day. I truly trust in God and I just know that everything is going to be alright, so none of you worry...just keep coming with those awesome prayers!!! Please pray for our friends as well,
Judge Getchell and his wife Anna(Non-Hodgkin's Lymphoma)&
Steve Symons and his fiancee Libby(Osteosarcoma)
P.S Erik is in the process of making a nice calander to show what day of transplant we are on, but he is only partially finished...that is what the little table at the top is, in case any of you were confused :)
Erik started his chemo today, and he is doing AMAZING! Hardly any sickness at all! There was a few times where he felt just a little "woozy"<--- word that he used :)
The chemo that he will be getting for the next couple days is Busulfan. They started him on anti-nausea drugs last night when we were admitted, so he is well medicated. Actually he is getting the Zofran(anti-nausea)constantly through a drip. It really helps alot I think, but Erik has informed me that he thinks green tea has magic in it and so I should just give him that alot. We went out to a chinease restaurant last night for one last "outing" and they brought green tea to the table. Erik drank like four glasses of it and was hooked:). Today I went up to the cafateria to get Erik some lunch and they happen to have packets of green tea so I picked some up. Earlier tonight Erik said he felt a little nauseated, so I made him so tea... and sure enough, he felt all better!! Now hopefully we can just keep this up for the next couple weeks. His appetite is still very much in tact, he had a huge plate of turkey, mashed potatoes, stuffing, and corn, and he nibbled all day. I am so happy that I married somebody famous...HE-MAN!! We have named our hospital room " The honeymoon suite" and one of the nurses saw that I had wrote it on the board and told me about this closet that they have on the pediatric side that has paint for the windows and art stuff, so I can decorate the room!! I am having a blast here! Everyone is so sweet and nice! I really feel confident that everything is going to go just fine through transplant. God is going to take care of us and in four weeks, Erik will be doing GREAT! I have never ever felt "scared" through this whole process, Erik has an amazing attitude, I wish all of you could see how great he is every day. I truly trust in God and I just know that everything is going to be alright, so none of you worry...just keep coming with those awesome prayers!!! Please pray for our friends as well,
Judge Getchell and his wife Anna(Non-Hodgkin's Lymphoma)&
Steve Symons and his fiancee Libby(Osteosarcoma)
Tomorrow Erik will be admitted to the hospital (floor 4A) and will finish his last day of the radiation ( yay!) Thursday he will begin the chemo for transplant. Here is the breakdown of how the next week and a half should go:
11/9/05-Day -9 ( all days BEFORE the stem cells are re-infused are negative, days AFTER are positive) Erik finishes last day of radiation, and is admitted to the hospital.
11/10/05-Day -8: Erik will begin Busulfan chemo for days -8,-7,-6.
11/13/05- Day -5: Erik will begin Melphalan chemo for days -5,-4,
11/15/05- Day -3: Erik will begin Thiotepa chemo for days -3, -2
11/17/05- Day -1: Erik will NOT have any chemo, give his body a chance to rest, then…
11/18/05- Day 0: Erik will receive his stem cells a.k.a TRANSPLANT, also he will begin the GCSF (stimulates cell growth) and we will wait for his stem cells to engraft and hope and pray for minimal infections/fevers and also pray for quick recovery.
Hopefully that isn’t too confusing the way I put it. I will be sure to keep all of you updated on his progress. We both just ask for prayers as we go through this last challenging “leg of the trip” I truly believe only God can make this be as painless as possible and give Erik a speedy recovery. Thank you all again for your amazing power of prayer!!
Today, was also Erik's first day of the TMI (total marrow irradiation) Erik was a little nervous going in, just because he didn't know if he was going to feel anything right away or if he was going to glow afterwards :) (All of us keep telling him that he won't, but I think he really wants to). He did wonderful though, he said it wasn't bad at all. He did start taking Zofran, which is an anti-nausea medication this morning so hopefully that will keep the nausea down. The doctors actually let me go in and see him for a quick second. They had to turn his body around so that his toes and lower body were going into the machine. He said the first part wasn't bad at all, except for the mask that he has to wear. The mask is a little tight on his face and head, so it gives him basically a pressure headache. Besides that he said the only other things that happened was when he closed his eyes, he saw a flashing blue light and there was a weird smell. The "weird smell" is actually the ozone in the air that the radiation creates, which is really interesting. The doctor was going to explain the flashing blue light, which is common, but he was too busy re-aligning Erik's body. All of the doctors had this really excited energy about them. I guess they were so excited to see how this worked out. Erik is the first person in the country to have this procedure done!!! I married a superstar ;) I think they are all really really curious to see how well this works out. After the radiation, Erik and I met up with Anna Getchell (Judge's wife) and went out to dinner! I can't believe Erik wanted to or felt up to it, but once again he proved to me that he was superman!
Tomorrow is another day of radiation, we don't have to be to the hospital until about 1:00pm so that will be a new feeling. Hopefully everything will go as well today! Please pray for all to go well and strength for Erik to get through this next month!
Sorry that we haven't posted a wedding picture yet, Erik's computer is having a bit of an attitude and so we haven't been able to download any of our pictures yet :(
Anyways...
Erik got his new hickman placed on Friday, which is still a little sore today, but he is doing great. He had to get an I.V for the procedure which he didn't like, especially because they had so much trouble trying to get it in, he was poked a total of seven times I think, so he was REALLY happy to get home on Friday. He had a pulmonary function test which went great and he tested out normal. He had a bone scan and a CT scan, both of which we will hear the results on Monday.
Today, Erik and I met with Judge and Anna Getchell, Judge was diagnosed with non-hodgkins lymphoma a year ago. We went to their house and watched the Gophers and ate burgers which were delicious! ( Good Job Anna!!) Erik also found out that Judge had an amazing collection of *Magic the Gathering* Cards. Magic is this card game that Erik LOVES, so it was really cool for him to find out that Judge had played it before. Erik and I had a great time there and are hoping to meet them again for dinner!
Tomorrow Erik and I are going to sleep in!!! Which we haven't done since before we left for St. Lucia so Sunday is going to be our "Stay in bed and do absolutely NOTHING but relax and enjoy the married life!!" But don't worry, I will have a post up :)
Quote of the day-
"Life's an Ocean, Sail It"
This is Mrs. Ludwinski....Mrs. -of-the Mr. Erik Ludwinski :)!!
Thank all of you so much for your sweet notes in the guestbook, and I got the hints, so sorry I haven't updated it since we got back...we have had quite the schedule in the last few days... but before I go into that I'm pretty sure that a few of you (wink wink) want to know how St. Lucia was.
The island was so incredibly amazing!! The weather was beautiful while we were there, there was a few little showers but nothing that impeded our adventurous spirits. I had never been on a plane or out of the country,or seen the teal waters of an ocean before, so this was just a breath taking experience. The resort was so nice, there were beautiful flower gardens and palm trees. The restaurants were delicious, and Erik and I made it to all five of them!! Erik actually gained 10 pounds while were there, so he is nice and healthy for transplant!! The breakfast menu's were so yummy, there was always fresh fruit and really good pastries. Dinner was amazing, there was a place there called Toscanini's where Erik and I had our wedding dinner, and we had our own personal white gloved waiter!!! Not to mention that the five course meal was delicious!
The wedding was everything I could have ever dreamed! We were married at 10:00 am and it was the most beautiful day. Around five that morning I had woke up ( Erik and I both for about the 7th time:))and it was raining out and my heart just sunk because we were having it on this gorgeous spot on the beach under a white arch that was wrapped in beautiful red tropical flowers. I said a little prayer quick and drifted back off to sleep. I woke up again to the alarm going off and I heard the birds singing, so I got up and went over the the sliding door and pulled back the curtain and God had answered my prayer...the sun was bursting from the sky and not a single cloud was there!!!! The ceremony was perfect and the reception was even better. Erik and I got to do the feed each other the cake, or should I say smash the cake into each others face! We spent the rest of the day just relaxing in the ocean and floating in the pool. That night we went to dinner, which had our own personalized menu's that said Mr. and Mrs. Ludwinski on them. It was so wonderful and amazing, I still can't believe that we are finally MARRIED!!!! I am loving the married life, all six days of it so far. I made my very first dinner as a married woman and we now have our very first left-over in the fridge!!! I made Erik breakfast in bed this morning mostly because I wasn't patient enough to wait for him to wake up, I was up at 7:00 in the morning wide awake waiting to make breakfast for my husband!!! We also did our very first grocery shopping trip as a married couple,which was really exciting! We are loving the apartment,it is very nice and comfortable, and close to the hospital which is nice for the early visits.
This week has been a pretty hectic schedule. Lots of tests and appointments. They gave us a calender for the week of all the appointments that we had and almost everyday has changed, times change or the test is for another day or we have to squeeze in another one. It is not hard at all,just very "fly by the seat of your pants" Erik is doing great!! All of the tests so far have come out great, his heart function is normal, no signs of tumors, his counts are great. Poor guy has had to do a lot of laying still though, one of the scans took almost two hours to complete and he had to lay still almost the whole time (he had one tiny little five minute break)His attitude is wonderful though, I cannot believe how strong and how much of a fighter he really is. Ladies I am truly sorry, I believe I found the world's perfect man and I am NOT willing to share him:)
Erik starts his total marrow irradiation on Monday,Tuesday, and Wednesday and he will be admitted to the hospital as well on wednesday. Thursday he will begin chemo for the transplant. One last day of tests tomorrow and then we will have a nice relaxing weekend!! Please pray for us and for Erik, the radiation and chemo will probably make him feel pretty icky, but I'm hopeful that God will be watching over him!!!
Right now the schedule is Mon: exit conference with results of all tests, Mon, Tues, Wed, radiation, admit to transplant floor of hospital on Wed, and then begin chemo Thurs which lasts for 7 straight days (UGH). Then there is always a chance that a bed will NOT come open right away, and they'll be forced to delay radiation a few days with nothing much to do...wouldn't that be nice!
They love the apartment, and it is very nicely furnished. They contacted Judge and Anna and will go to their house for food and fun on Saturday! Please keep praying for JUDGE!!!! www.caringbridge.org/mn/getchell
They will be able to update this site and more importantly put PHOTOS on the site as soon as Erik gets his computer working. He hooked it up to the internet and was instantly infested with malware, so he is busy trying to get it cleaned up and working.
Nevertheless, I think we still need to send them constant reminders of how much we want to know WHAT IS GOING ON SO THEY BETTER START UPDATING SOON!!!!!!!!!!!
Erik and Brandi are back and doing great. They had a wonderful time, and truly enjoyed St Lucia! They arrived at the apartment at 3 am, because Brandi's car had a flat tire. What fun! They managed to get 3.5 hours of sleep before having to get up for the first clinic day on Tuesday.
They are in a VERY nice apartment, and Erik has had two very busy days at the clinic and hospital already. We left Tuesday afternoon, and they were returning to get their bags from the airport that did not get on their plane.
I think we should all email them and hassle them about updating this site, now that they have a computer AND my digital camera!!!
Today is Aron's birthday! He is 6 years old!
I have birthday preparations to make...
...so be sure to email Erik and Brandi to continue this saga!
Thanks for praying and checking up on them, and showering them with your love!
Now you readers who are fellow neuroblastoma experts, you can skip the rest of this post. This is a primer for those who are unfamiliar with what exactly happens in a stem cell transplant. I got such a kick out of the NDSU newspaper description, a typical and amusing description!
On Nov 1 Erik will begin a very thorough series of tests. Every test you have ever heard of, and then some. They want a complete baseline before transplant to assess all of his organ functions, and all possible ways of determining disease status. So the first day consists of a few tests, meeting with Dr Tolar, meeting with the transplant coordinator for schedule, and care givers orientation. The next several days will proceed with many more tests, and may be complete around the middle of the following week (Nov 9). There will be an exit conference with Dr Tolar to go over all the test results and sign consent forms. Then the radiation begins, and Erik will be admitted the third day of radiation, and have a new central venous line put in that day also (a line that goes in chest into his heart for chemo, blood products and anticbiotics). The radiation is a new type that delivers all the radiation to the bone and bone marrow, called tomo therapy or total marrow irradiation (TMI). This is the experimental part of his transplant regimen, and is supposed to spare vital organs. Let’s hope so.
The radiation will make him feel sick and knock down his counts. Then the real fun begins. Erik will get seven days of very high dose chemo (busulfan, melphalan, and thiotepa) and then one day of rest. His purged stem cells will be thawed and infused just like a blood transfusion, which will take about an hour. They will watch him closely through this process for allergic reaction to the preservative, but it shouldn’t be a problem since he has had the preserved bone marrow cells in 1992.
Now a terminology lesson. This is not really a transplant, because Erik is going to receive his own cells (autologous graft). If he was going to receive someone else’s cells, it would be a true stem cell “transplant.” A better term is stem cell “rescue,” since the radiation and chemo will destroy all his existing bone marrow and he would die without rescuing him with stem cells. He will have no danger of graft-versus-host disease (where the donor bone marrow recognizes the body as foreign tissue and attacks all organs). The reason this is commonly called transplant is because so much of the process is similar to a true transplant, takes place at a transplant center, and you have transplant doctors.
Really, it is a giant chemo (plus radiation) with a rescue. The good news is Erik has back up cells also, in case the first batch doesn’t engraft in a timely manner. He will be in a special isolation room with filtered air and on antibiotics to prevent infection while waiting for his stem cells to migrate to the bone marrow and grow, and eventually make enough white cells to replenish his immune system. He’ll be dependent on blood products (platelet and red cell transfusions) for quite a long time, even after his white cells begin to grow and fight infection.
The advantage to the way it is done now (stem cells forced into the peripheral blood from growth factors, then filtered out of the blood) as opposed to the old fashioned bone marrow transplants (where under general anesthesia you have numerous needle pokes in your hind quarters to aspirate a quart of bone marrow) is that the stem cells from the peripheral blood surprisingly engraft about twice as fast as the bone marrow cells. I am not sure anyone has an explanation for that interesting phenomenon. Anyway, this means his time spent inpatient should be only 3 or 4 weeks, and then he’ll go back to the apartment, and go to the clinic everyday for blood products and antibiotics. He’ll have to wear a mask everywhere he goes, and stay away from kids.
The apartment is four blocks from the hospital/clinic, and the university has a free security transportation service they can call every day to drive them to the clinic and back. This will be nice because it will be cold!
Basically the first three weeks after he is admitted (roughly Nov 14 to Dec 5) should be really terrible. Erik will have severe mucositis (mouth sores and sores all the way through the GI tract) and be on morphine drip for the pain. He will be extremely nauseated from the chemo, and hopefully they will have an effective combination of anti-nausea drugs. These are really tricky because some cause nausea in some people, and hallucinations, and other bizarre side effects.
He’ll have to have baths several times a day during and after the thiotepa, because it is excreted through the skin, and can cause burns and irritation, and smells terrible. The preservative in the stem cells also creates an overpowering nasty smell and taste too, that lasts a couple days. They will watch him closely for liver function, since veno-occlusive disease (VOD) is an unfortunate side effect of this combination, and is very deadly. After his counts dive to zero, they’ll be pumping him continuously with antibiotics. I am hoping this new and improved version of transplant will go rapidly enough he doesn’t have to have any anti-fungal agents (last line of offense against infection). Amphotericin is referred to “shake and bake,” it is AWFUL stuff.
Meanwhile everyday will revolve around meds, mouth care, and physical therapy. It would be nice if they could just put him in a coma for three weeks, but they want him up and moving to prevent respiratory distress. The physical therapist is generally not a very popular person with the transplant patient. I think they get hate mail. Erik will be on TPN (total parental nutrition—food dumped directly in his veins) for weeks, until the mouth and GI tract sores resolve.
The social worker will come by everyday to make notes on how he is handling everything, and notes on Brandi. Much like a fish bowl. If they don’t like what they see, they send in the psychologist. Rarely the psych team will get involved, since all they do is dispense drugs.
Sound like a picnic? Now you know how to pray for Erik and Brandi. As you can see this will be a long haul, and if Erik remembered what he went though before, he might not have agreed to this. But if he pulls though, this will give him a decent chance of ridding him of this beast. Again.
After they are back in the apartment, they will go in to the BMT clinic daily, then every other day, and so on, until he is weaned off blood products and looks pretty good. Somewhere in the vicinity of mid to late January they may be released to move where they please, and at that point they’ll have to decide how far they want to live from the hospital. He’ll have frequent follow up tests, and he’ll be on some “maintenance” therapy to hopefully take care of any NB cells that remain.
THANKS FOR PRAYING!!!!
I also had a call from the transplant social worker (in case that title looks strange, all transplant patients are assigned a social worker to help with everything non-medical surrounding the complicated ordeal of transplant, and housing is one of those issues). She said their apartment is ready! Thanks for your prayers! This will be so nice to get them moved in before they get back. So I will call the manager to see if I can check in the apartment on Monday and I’ll bring down all the stuff they couldn’t fit in Brandi’s car!
I am so surprised Brandi wasn’t very nervous about flying. Erik seemed more nervous about forgetting things, but both were in very good spirits when they left. We all held it together really well! A very happy and sweet farewell.
Please pray for them this week! Pray Erik stays well, no sunburns, and they get back safely. Pray they bring back some beautiful memories!
Praise God for His goodness to us!
To Brandi
Spring in California
Born one day early
The most beautiful baby boy
Happy toddler
New house in Ohio
Baby brother Karl
Smart kindergartener
Boston bound
First grade at home
Fall on the ice
Pain and tests
Cancer
Year of terror and suffering
Miracle of miracles
Give life to Jesus
Celebration in Cape Cod!
Healthy and strong
Legos expert builder
Hard to hear
Move to Colorado
Precious sister Lesa
Piano and science and math
Brilliant middle schooler
Hawaiian vacation
80 acres in Minnesota
Baby brother Aron
Mission trips to Mexico
Football and Science Bowl
Tall and handsome
Snowboard
Friends and car and job
Meet the most beautiful girl
True Love
College and compose music
Skip calculus
Plan summer in Mexico
So tired always
Ache and so pale
Cancer again
True Love heals
Through thick and thin
Good times and bad
Sick and tired
God offers Himself
True Love brings life
Time to give him to you
You are sunshine and flowers
You are dreams come true
St Lucian wedding
True Love heals
Erik got his line out this morning, and they took cookies to the wonderful crew at Roger Maris Cancer Center to say good bye. They are such nice people. It is so lovely to be known by name. Not so at U of M! Erik and Brandi picked out a funny thank you card to give the gang, which made some reference to his hind quarters, which they have seen quite a bit of thanks to seven bone marrow biopsies. They all had a good laugh. I made up a photo collage thank you from the rest of us, with no reference at all to any hind quarters.
So now they have to pack and finish up with loose ends. We did make a reservation at a motel 6 blocks from the hospital for back up in case the apartment does not come open while they are gone. We have to have a plan for them to get in at 2 am, which could be tricky! We’ll work on that.
Bone marrow aspirate was sent to Dr. Seeger’s lab on 9/28. They were waiting to run the test (immunocytochemistry or ICC) when they found out what study Erik would be on. Well, the transplant protocol doesn’t require the ICC, so they said if they run it, they’ll bill us personally $600, since I guess they know insurance won’t pay. So the nurse at Roger Maris called me and asked me if I wanted them to run the test, and knowing that it would make no difference at all what the results are (still going for transplant) I told her to tell them no, don’t run the test. When she called them back to tell them no, they had just run the test! So it isn’t a big deal, in the world of medical bills $600 is NOTHING so I am not concerned either way. But I am glad we got the results anyway (remember I like to count things!) The test showed 12 NB cells per million bone marrow cells. This was before the last chemo, so hopefully it is back down now, but it shows how NB doesn’t sit there at low levels, it grows. The 8/15 and 9/6 ICCs were both zero, and the 9/6 biopsy was neg. Three weeks later, it was positive and the ICC showed tumor. We have to be aggressive with this beast.
Thanks so much for your prayers for Erik and Brandi. May God bless them in amazing ways as they begin this journey together. It is a rough road, and an ugly battle, but they are brave warriors.
Tomorrow marks 46 years my parents have been married! Let’s hope for at least that for Erik and Brandi. Happy Anniversary Mom and Dad!
Can you guess who my favorite Sesame Street character was??? Really he wasn’t…but I sure like to “count” things!
Here's another statistic that blew me away. More MEN die of breast cancer every year in the US (460) than children die from neuroblastoma (about 300-400). I guess we are now convinced that neuroblastoma is rare. That’s good! But the bad news is that it is deadly. If you ever give money to support childhood cancer research, please make sure some of their money goes to support researchers working on neuroblastoma. I am so thankful there are dedicated researchers working on this dread disease that most people have never heard of.
The other thing to keep in mind is that childhood cancer is so different from adult cancers (cause, incidence, age, pharmacokinetics of drugs, biology of the diseases, etc) that advances in adult cancers unfortunately do next to nothing to advance the understanding and treatment of childhood cancers. In 2005 American Cancer Society predicts that 1.37 million will be diagnosed with cancer and 570,000 will die of cancer in the US. Since the numbers pertaining to children are: 12,500 diagnosed and 2000 die each year, childhood cancer is obviously a very small proportion compared to the total.
This is why such a paltry amount of funding is available for research on childhood cancer. But before you conclude, "that seems fair," remember that childhood cancer is the BIGGEST disease killer of children. Almost all other diseases you have ever heard of that kill children...cancer kills more than all those diseases combined.
Years of life saved: since the average age of an adult diagnosed with cancer is…old, and the average age of children diagnosed with cancer is…young, the number of years of life saved is dramatic. Did you know that treating prostate cancer prolongs the life of an average man only 9 years? Children have the potential to go on to kindergarten, college, get married,…have a life in other words! You get the idea. Now just don’t forget.
Back on the farm: Erik and Brandi leave in one week from tomorrow! So far, so good. They are sort of ready. No marriage counseling, no money, no job, and an appointment for a stem cell transplant the day after they get back from the honeymoon, but what …me worry? No way. God has it all figured out.
Keep praying! Still at number 3 on the apartment list and holding…
PS If you look quick, Erik was interviewed by NDSU newspaper Spectrum:
http://www.ndsuspectrum.com/news/10_14_05_news_cancerone.htm
Recent discussion on the NB listserv of the incidence of NB got me searching out some numbers, and for the quantitative-minded, this will be interesting. Skip it if you are a qualitative-type (NB is rare, period)!
Parents of kids with this cancer naturally want to raise awareness so that money will be eventually spent on trying to find a cure. This is a tricky business when the money for cancer research is generally doled out in proportion to the incidence of each cancer.
Some childhood cancers are “curable” and great strides in research have made that possible. A generation ago, all children with leukemia died. Now those with acute lymphoblastic leukemia have nearly 90 percent cure rate.
High-risk neuroblastoma is one of the most difficult cancers to treat, and the cure rate is still dismal. We want to push those survival statistics up!
All numbers are for the US:
650 new cases of NB every year
300,000,000 total population
1 NB per 460,000 person (all ages) per year
During a person's average 70 year life span, the US will have had 45,500 cases of NB. Years of life lost: 65 x .4 x 45,500 = 1,183,000 (this is WAY over-estimating survival to age 70, the reality is MANY more years lost).
152,700 pediatricians in the US, according to bureau of labor statistics -2002 http://www.bls.gov/oco/ocos074.htm
1 NB case per 230 pediatricians per year.
This means in a 40-year career, only 1 out of every 6 pediatricians have EVER SEEN ONE CASE OF NB!
Now look at pediatric oncologists:
801 pediatric oncs; estimated from from members of ASPHO (The American Society of Pediatric Hematology/Oncology-- actually there are many more that are not members): http://www.aspho.org/
650 cases NB per year, seen by 801 ped onc:
The average pediatric oncologist sees less than one new NB case per year.
238 US COG (Children’s Oncology Group) institutions listed on CureSearch, and if every NB case is treated at COG institution, each sees only 3 cases of NB per year.
And we wonder why the general public says "neuro-what?"
***********************************
Erik is doing a great job growing cells...his counts have been excellent this round, with platelets dipping to 21 on Thursday and 23 today (they transfuse at 20) so no transfusions since Monday! His hemoglobin has been exceptionally good, staying way over 9 (transfuse at 8.5) and white cells dipped to 1 but are now up to 3 (normal is 4-10).
So Erik will get counts again on Monday and then hopefully, line out on Wednesday, since he'll be unlikely to need any blood if his counts are all on the rise. Still have not heard anything about the immunocytochemitry sent to Dr. Seeger's lab on Sept 28. Erik's last bone marrow did show tumor again, but less than one percent. I look forward to seing if the ICC is still clear. I am NOT thinking about the fact that Erik would have been eligible for the hu14.18-IL2 antibody trial after all...
Blessings to all--please pray for all our friends fighting for their lives!
Erik got the nicest call last night! A young man nick-named Judge was diagnosed with high-risk non-Hodgkins lymphoma TWO WEEKS after he got married to Anna, and has been in treatment for a year. He is headed for cord blood transplant at U of M as soon as they shrink the recurring tumors to the smallest possible size. Pray for Judge! He called to offer Erik and Brandi a place to stay if they don't get in the apartment right away! More proof there are awesome people in this world...
His caringbridge site is
http://www1.caringbridge.org/mn/getchell
Speaking of apartment, Brandi and Erik moved from the 5th spot to the 3rd...so thanks for praying! Keep it up!
Brandi is getting all kinds of I'm-getting-married paperwork done! Bank, car insurance, social security, med insurance, school loans, financial aid, you name it! The visit with the Becker county case worker went well and they got important stuff figured out for when transplant starts. Whew. See, they can do it!
Erik needs to sell his junker of a car. Cheap.
I called a "wish organization" that frequently provides "wishes" for people like Erik, and honeymoons are the most common wish granted! Wish organizations are generally geared to children, and go up to age 18. This is the only one I could find that grants wishes to over 18 year olds. I am disappointed though, they cannot help with Erik and Brandi's trip because
A. It is already on my credit card (!), and
B. Because it is out of the country. Bummer!
They offered him a basket of food and tapes in transplant, which was very nice.
Did I forget to tell you Erik never took his calculus final? Count down is exactly 10 more days to "I" converts to "F" duh-dum dum... Numerous times I reminded Erik of how much fun we had reviewing for his statics final together. That is “statics,” as opposed to “dynamics,” not statistics. Forces on bridges and all that. It was really fun for me anyway, and he did well! But nooooooo, he doesn't want to spend the next 10 days learning a whole semester of calculus all over again. I just don't understand that kid! Argh!
His professor did send the nicest email, though, saying he would make it his personal mission in life to make sure Erik succeeds in calculus and PASSES it even if he has to open a class with Erik as the only student! So there is hope after all.
Focus! Love! Rejoice! Hope!
God is so good!
Even though today is Paul’s birthday, Erik, Brandi and I went to Fargo to Steve's benefit. I am so happy the birthday boy didn’t mind! We were thrilled to see Steve there. He has not been out of the hospital much since last April, and not out of Minneapolis at all. It was wonderful to meet his mom Carla in person, after getting acquainted through emailing and phone. I am so impressed with the busy NDSU students who put on the benefit for Steve, and manage the online fund raiser selling shirts and wristbands. GO STEVE! This is a tremendous source of encouragement for a very courageous young man. Libby is a beautiful young woman, and it is easy to see how important her role has been in fighting and healing for Steve. I am humbled by his mom’s attitude toward the ups and downs of Steve’s experience…I know I don’t have the character she does to graciously handle some of the traumatic events Steve has endured along the way. May God create in me such a heart!
THANKS so much to Robin who donated many items to the auction! Twice NDSU students came up and thanked me profusely for bringing the items! We checked and everything was going for top dollar when we left!
An NDSU newspaper reporter came and interviewed Erik and Brandi and Steve. We saw TV news cameras also, interviewing Steve.
Please keep praying for Steve, as he has a long way to go yet with miserable chemo. He will be admitted tomorrow for another round. Erik and Brandi will be checking up on Steve and Libby when they get to U of M Nov 1st.
Erik will get counts done tomorrow and Brandi and Erik are meeting with the case worker in Detroit Lakes to get more information on medical assistance. Judging from the color of Erik’s lips, and headaches, Brandi and I are predicting he’ll need blood, so they’ll probably continue on to Fargo. Then Brandi has to rush back home to see her aunt who is making her dress for the wedding!
Please pray:
1. Erik and Brandi move up the waiting list for university apartments for transplant patients quickly. They are currently number 5 on the list, and it would help tremendously if it comes open soon so we can get some stuff moved in before they leave. They return from the honeymoon at midnight on Oct 31st and then Erik begins the transplant work up the next morning. If it doesn’t come open, they have to get a hotel room (expensive!), since the work up is outpatient. Erik will be admitted to the hospital after a week or so of tests, and begin radiation.
2. Erik’s counts to climb and stay up after he gets his line out. Sure don’t want to worry about low counts and needing blood on his honeymoon!
3. Pray for safety for them as they travel, and protection for Erik when the transplant process is underway.
4. Pray for God to bless them in their marriage and enlighten them, strengthening them as they grow together in Jesus!
Beginning tonight (Rosh Hashanah, Yom Teruah or Feast of Trumpets) upon hearing the shofar sound, God’s people Israel spend ten days listening, reflecting on God, turning their hearts to Him, repenting, and yielding to Him. What a perfect picture for us in this incredible time of seeing God’s hand upon us. His mercy and incomprehensible love have been lavished on us, and we praise Him for all He has done!
May God’s mercy and love be upon you as well, and may you heed the sound of His voice!
Chemo ended yesterday afternoon. Even though Erik feels a little sick (comes and goes), he played ping pong over an hour with Paul, went to the clinic to get his counts and neulasta shot (the pricey one, somewhere between $2000 and $4500, depending if you are the pharmacy billing or the insurance company paying). Counts are fine, but on their way down. It would be REALLY awesome if he didn’t need so many blood transfusions this time (since May he has had 19 transfusions, and after transplant he’ll need many more—in 1992 he had 37 transfusions!)
Brandi and I sat on the floor looking at some killer deals she got on summer clothes on clearance, squealing quite a bit, and reminiscing about the first time Erik brought her over for dinner to meet us, three years ago. She has known Aron half his life! Even though she was really nervous at first, she said she quickly relaxed. Maybe it was shooting the potato gun that eased her mind---we were no stuffed shirts! It blessed my heart, she said she felt like she had known us forever. May it always be that way! May we have so many happy memories to share, decades on end!
She is enjoying the surreal notion of going to an island to get married. This just could not be more perfect! Her mom wants to have a reception next summer for them, so I hope that works out.
They have so much to do before they leave, and I need to gradually work them in the paperwork loop. They have no idea how many details have to be managed with complex care like this, and they have to start thinking about what they want to do after transplant, and where they want to live. But their heads are in the clouds. I guess it will have to wait til later…
Sing aloud to God our strength;
Make a joyful shout to the God of Jacob.
Raise a song and strike the timbrel,
The pleasant harp with the lute.
Blow the trumpet at the time of the New Moon,
At the full moon, on our solemn feast day.
For this is a statute for Israel,
A law of the God of Jacob.
This He established in Joseph as a testimony,
When He went throughout the land of Egypt,
Where I heard a language I did not understand.
"I removed his shoulder from the burden;
His hands were freed from the baskets.
You called in trouble, and I delivered you;
I answered you in the secret place of thunder;
I tested you at the waters of Meribah. Selah
Ps. 81:1-7
Between just hurricanes and kids with cancer, you must feel overwhelmed with requests for donations! But I encourage you to consider what Steve has been through, and how his family is struggling.
He has not been approved for disability, which is an OUTRAGE, his family lives eight hours away from U of M hospital, and paying medical bills and living expenses for Steve in Minneapolis have been astronomical. He was in traction for months, in a spica cast (look that up on the web, you'll be SHOCKED), and then after all that the doctors decided to amputate near the hip in August. As if all that wasn't bad enough, Steve's biopsy came back with large amount of live tumor (30 percent, and they like to see no more than 2 percent), so his prognosis is now very poor. He has to go through four more rounds of chemo of the worst possible drugs (the same stuff I have been whining about wanting Erik to avoid) and learn to use a prosthesis.
Please pray for Steve and Libby! This would have been his senior year in college. Libby has stayed by his side since diagnosis.
To see photos of where they are going go to www.sandals.com and look at St Lucia Grande photos.
I am hoping we can swing some sort of little celebration before they go since there will be no time after they get back…with transplant immediately after. He’ll be tied up with that until end of January, and then immune-suppressed for months…
Dr. Kobrinsky said CERTAINLY Erik could get his line out, scheduled for the 19th of October. He seemed happy today for Erik and Brandi, and said congratulations more than once. Brandi is going to ask him tomorrow about the bone marrow biopsy results…(from Wednesday).
Bone marrow biopsy number 7 said "less than one percent tumor" whatever that means. I am going to call a PATHOLOGIST on Monday and find out what on earth they are seeing under the microscope...this is the FOURTH consecutive bone marrow biopsy that they read as one percent...something. They sent it to Dr. Seeger’s lab…again. Guess we’ll keep them busy! This time I WON’T be holding my breath for the results.
Meanwhile it is extremely nice to think about something HAPPY like a wedding rather than transplant! I am so touched by the sweet response of people. I thought most people would wrinkle up a nose and think ARE THEY CRAZY? THEY DON’T HAVE JOBS! HE HAS CANCER! WHAT ARE THEY THINKING!?!?!
But if anyone is thinking it, they are nice enough not to say it. In fact, the only response is downright JOYOUS!!!!!
That works for me!
Amazingly, all the financial details and insurance issues actually improve with Erik losing our insurance. The BMT financial case manager said “halleluiah!” when I told her about the wedding and losing Tricare. I am really shocked they like medical assistance better that Tricare. Medical assistance already approved the transplant, and Tricare denied it, so they are going through the appeal process with Tricare. It made her day! Thanks for all your tax dollars, by the way.
Brandi is so cute. She said she and Erik were getting so excited talking about the trip, they were squealing and jumping up and down and then Erik would start to feel sick from the chemo, and then he said, “I need to calm down now.”
He’ll be feeling great soon!
http://www.wday.com/
Click on 6:00pm
You can move the slider over to 6:15 minutes for the short “intro upcoming clip” and then slide over to 9:00 minutes for the clip on Erik.
Then you can watch it over and over like I did!
This will be available online for 24 hours (beginning 6pm Thurs night)!
Erik and Brandi leave for St. Lucia on Oct 24, and return on Oct 31.
Erik begins the transplant work up the next day, Nov 1.
They are soooooooooooooooo excited!!!!!
Pray Dr. Kobrinsky will be agreeable to taking Erik’s line out so he can SWIM!
THANKS to everyone who has prayed and supported Erik and Brandi through all this!!!!
A feature reporter form Fargo WDAY ABC TV-news affiliate called about Erik, and they are going to interview him at Roger Maris Cancer Center while he is getting chemo! Erik will finish chemo on Sunday afternoon.
Steve Symons’ mom sent me the photo above. Erik and Brandi went to visit Steve a few days after his leg amputation, while Erik was having stem cell harvest and line infection in August. They were only a couple rooms away from each other on the same floor. Steve proposed to Libby the day he was diagnosed, which was three weeks before Erik. Pray for Steve. He is having a rough time of the chemo, and has four more courses. His biopsy showed much more live tumor than they like to see for good prognosis. He has a long way to go yet, and on top of everything, trying to learn how to use prosthesis. Steve has a benefit dinner in Fargo on October 9th, and Erik and Brandi plan to go.
Also pray for my little friend Spencer (11) in Canada. He has had two transplants, one using his brother’s bone marrow, and he is still fighting Neuroblastoma. They just learned he has new spots on his scans, so his disease is progressing in spite of hoards of every chemo conceivable. Another 10 year old boy Jonathan has been battling NB for 7 years, and now has a tumor compressing his spine so he is paralyzed. Heart breaking.
Be filled with the wonder of God’s wisdom and power displayed in the heavens and all around us. God’s wisdom is infinite, even if we don’t get it.
I made a nice dinner tonight (grilled salmon with FIVE side dishes—six if you count the lemons!), a fairly rare event since mid May…I was feeling guilty when Aron said something to the effect that we don’t eat dinner anymore…ouch!
Erik feels so good. His last chemo was the middle of August, so he has had a looooooong break. He went to get another driver’s license today, since I lost his license and checkbook some time ago. He composed some more music. He is really good! He took a classical piece from scratch and “remixed it” on his computer. He also made 3-D computer graphic models of faces: Aron's, Lesa's and his own.
Everyone is in good spirits, optimistic of smooth sailing through transplant. I have more details to work out, but everything looks pretty straight forward. I want to make sure the radiation therapist has the radiation report from 1992, so she knows exactly where prior radiation field was. Couple hundred more calls should take care of everything. So glad God is in charge, everyday, all day! Stress is inversely proportional to the amount of time I spend reflecting on that fact.
Erik called his calculus professor today to see if he can take his calculus final tomorrow before he starts chemo on Wednesday. Pray for a miracle! Healing from cancer is one thing, but passing his calculus final without studying after almost five months…???
Brandi is a very coordinated girl. She learned to snowboard a while back and only had to go to the emergency room once after a few hours on the slopes. I have seen her chew gum and walk without getting hurt. Unfortunately, though yesterday proved rough. Brandi ate a cookie (one of my famous chocolate chip cookies that Paul likes frozen) and somehow ripped a huge chunk of skin from the roof of her mouth! Then she had a hot chimichanga and burned her mouth. Then she bit her lip really bad. She is eating ice cream right now, which is pretty safe I think…but then maybe I better go watch her just in case…
Karl is doing great in school so far. He works hard and is very organized (must have gotten that from his Dad!) and Lesa is teaching Aron his verses for Sparks. Lesa is reading the Unfortunate Events series, and so haven’t seen much more than the top of her head lately. The cat had seven kittens. We have to do something about that cat.
Paul is working on the shop in the garage, and it is coming along nicely. His cholesterol and blood pressure are down. I have a new math student to tutor! Geometry is very good therapy I decided. Meditating and planning a presentation for youth group exploring how God shows us Himself in physics, I lost five pounds completely by accident. Hmmm...I wonder if that has anything to do with Aron's comment about not having dinner anymore?
Nevertheless, life is good.
"Look to Me, and be saved,
All you ends of the earth!
For I am God, and there is no other.
I have sworn by Myself;
The word has gone out of My mouth in righteousness,
And shall not return,
That to Me every knee shall bow,
Every tongue shall take an oath.
He shall say, 'Surely in the Lord I have righteousness and strength.
To Him men shall come,
And all shall be ashamed Who are incensed against Him.
In the Lord all the descendants of Israel Shall be justified, and shall glory.' "
Isaiah 45:23-25
Wow, is it nice. Jesus supplies what He promises! Even with gut-wrenching decisions and raw emotions afoot, He gives peace, and inexpressible joy.
Abundant living in spite of our circumstances is a reality. My focus is back where it belonged all along, and God has healed my anxious heart!
As much as I didn't want to hear it, He said it had to do with learning from Him, for He is lowly and gentle in heart. Does He mean I need a heart like that? And control-freaks need not apply?
**********************************************************************
Erik and Brandi saw Dr. Tolar (a truly superior human being and doctor) this morning. They got every question answered.
Erik decided he WILL undergo a stem cell transplant.
He returns to Fargo next week for chemo and bone marrow biopsy, and then back to U of M on Oct 14 for more tomo (TMI) planning, then official work up begins Oct 24. He should be at U of Minn for two or three months. I am working on housing, but pray for Erik and Brandi and their decision about timing for marriage. It turns out financial and insurance issues will actually be a bit better with them married, thanks to the generous social programs offered to the destitute by the state of Minnesota!
Thanks so much for being faithful friends in praying and encouraging us all in so many countless ways. I am so humbled by the attention and love showered on us.
Please pray for Erik, physically, spiritually, and emotionally, as he prepares for this next step. Pray for Brandi for strength and endurance.
Though the fig tree may not blossom,
Nor fruit be on the vines;
Though the labor of the olive may fail,
And the fields yield no food;
Though the flock may be cut off from the fold,
And there be no herd in the stalls--
Yet I will rejoice in the Lord,
I will joy in the God of my salvation.
The Lord God is my strength;
He will make my feet like deer's feet,
And He will make me walk on my high hills.
Hab 3:17-19
Erik and Brandi are meeting with one of the outstanding transplant doctors at U of Minn tomorrow at 9:30, after having another CT for the radiation planning (tomotherapy) at 8 am. The three of us met with the same doctor initially in June. Brandi and I took several pages of notes, while Erik slept soundly through the hour-long appointment. Pray that Erik stays awake!
This is the hardest thing I have ever done. Staying home--even with two doctors encouraging me to come anyway. But I feel this is so important that Erik gets an opportunity to talk to the doctors with out my dominating the conversation!
It really hit me...he has to sign the consent form. Not me.
Please also pray that Erik listens to God's voice through this difficult time. He is confused, paranoid, and sick of everything. He is looking for an easy way out, and I am afraid he doesn't realize there isn't one.
I have asked God to examine my heart, and He has! He has shown me that all my striving to understand this disease and treatment strategies does not have any impact because it has to be Erik who decides, even if HIS decision is based on minimal information. I can't control this situation, and I can't control Erik's choices.
Please pray about unresolved insurance issues.
Pray for all of us!
New information includes two doctors emphasizing Erik’s best shot at cure is with myeloablative therapy (stem cell transplant) and that only a real oncologist (not an amateur) can truly assess Erik’s risk of veno-occlusive disease. Poor Erik is feeling a little bit jerked around. He made his decision to do consolidation chemo, but I panicked he didn’t consider ALL the information, including late-breaking news about the good shape his liver is in, and the fact that really every doctor since the beginning agreed transplant was his best shot at cure, and Dr. Kobrinsky only suggested the consolidation chemo if Erik refused transplant, which he still can, of course. Dr. Sondel consistently said Erik should go to transplant, and only go in his immunotherapy trial if Erik’s bone did not clear, showing signs of chemo-resistance. I was thoroughly convinced that the immunotherapy was the best step, in my fantasy world where non-toxic treatments actually cure aggressive, deadly cancers.
Pray for Erik. He needs to talk to the docs himself. Almost all information has been filtered through me, and although I have offered stacks of reading material, and printed out hoards of emails about all this, (he won’t read any of it) he ultimately is responsible for his own decision.
I have permission to post the following essay by Steve Dolling, which makes an astounding point about all this decision making. I have mentioned his son Spencer before. Spencer has been fighting Neuroblastoma continuously for 3.5 years. He has had an auto transplant and an allo transplant, and everything else, and he is still on chemo. Pray for Spencer!
Informed Consent, by Steve Dolling
By now you are used to the familiar style. Deep sense of drama that sucks you along for a page and a bit followed by a quirky twist that tickles the funny bone. This isn't one of those, and if that is what you are hoping for, you are likely to be disappointed. Of course there is no way you are going to believe me here at the beginning. You've been fooled before. Fair warning. I had to advise you of the risk before we begin. It's your choice whether or not you care to read on.
Informed consent. It's the foundation of all the non-emergency treatment and diagnostic procedures that they do at the hospital. Whether it was created as the outcome of some enlightened medical care philosophy or it was thrust into the healthcare realm by an overly-zealous legal system doesn't really matter. Inherently, you have the right to choose. Nobody can do anything to your child without your OK. The decisions belong to you.
So how does it all start for the typical cancer family? Some hideous sequence of events brings you to Children's hospital. The first things they need to do are tests. Lots and lots of tests. "Yes we would like to do an ultrasound, x-ray, CT scan, bone scan, more blood tests, and an MIBG to accurately diagnose and stage your child's disease." Yes you get to choose whether or not to subject your child.
Inevitably follows some definitive diagnosis and a treatment protocol. The reams of chemotherapeutic agents all have side effects. "This one causes baldness, that one causes high frequency hearing loss, this one can affect the kidneys, that one can affect the heart, nausea is a common side effect, etc. etc." You listen with a sense of bewilderment and some amusement. You have a choice but don't even bother to ask about the alternative. You already knew the first time you heard them say the word "cancer".
Depending on what you're up against, surgery might be part of the game. A general anesthesia alone sounds like a bad risk. Once the surgeons fully detail all the potential complications of what might happen when your kid's particular tumor is removed, you sometimes wonder about the benefit of being informed. It doesn't leave you with a sense of comfort, but at least you have the choice.
Then there is the bone marrow or stem cell transplant. Now that meeting is a happy one. Let's contemplate the potential major organ failures: kidney, liver, lungs, bone marrow, and very occasionally, the heart. "Oh and of course there is some risk to the brain but generally not unless the other organs go first. Oh yes and of course there is infection. Your options are bacterial, fungal and viral. They are all potentially lethal, but we do our best." Strangely enough, they don't even mention hair loss as an adverse side effect on this one. Remind me again of the options please, I have a choice to make.
These are all the impossible choices. Not that it is impossible to choose one way or the other. It just feels impossible to believe you are in the situation to begin with. Impossible to believe that you might eventually reach a point where you might want to consider option B.
But it's not all high-drama. Every day there are a bunch of informed medical decisions to be made. Would he like this medicine in liquid form or can he take a pill? Gravol now or should we wait and try to space it between the ondansetron doses? Platelets are low today, but not real low, we could hold off until tomorrow to transfuse if you can come back to the clinic then? He's losing weight; we should consider an NG tube. And on and on and on.
These are all the meaningless choices. Not meaningless in the sense that they are unimportant. Do a good job on all the day-to-day stuff and it can have a big impact in your child's comfort and your peace of mind. Make all the wrong choices though, and it won't likely have any effect on the final outcome. In that sense, they're all meaningless.
So of all the impossible and meaningless choices that you get to make, is control just an illusion? Isn't it just one great train ride you are on and at some point you pass a switch in the track that determines your final destination?
That might be true. But there is one other choice you get to make that does have a lot of meaning. It may or may not affect the destination, but it certainly does affect the ride. It's not even an obvious choice because nobody will ever present it to you. You don't have to sign the consent form. You don't even have to announce your decision.
You get to choose how miserable you want to be.
OK. Life sucks. Your kid has cancer. But every day you get to choose if you want to be pessimistic or optimistic. You get to choose whether you want to be a victim or your kid's biggest champion. You get to choose if you want to endure the day or have some fun and make the best of it whatever it brings you. You get to choose what example you want to set for your kid. And you get to choose whether you want to teach your kid that he has a choice of whether or not to be miserable.
It's a choice that you actually get to make a dozen times a day in different circumstances. And you don't always have to make the "happy" choice. Sometimes it feels really good to just have a bad moment and tear the head off the incompetent idiot who appears not to have the skills to issue your parking pass.
Once you realize that you actually do have control over just about everything in your life except perhaps the impossible choices and impossible outcomes, it makes the journey a whole lot easier.
You might still be lumbering down the railroad, but if you believe you're flying the space shuttle, you might actually have a better chance of reaching escape velocity. And it's a whole lot more fun to eat astronaut food.
What I really want to be is a good Mom.
So I asked Erik who he wants for a doctor. He picked Dr. Kobrinsky. My job will be to refrain from looking over his shoulder too much. And to pray much much more.
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This has been the strangest of all weeks.
I have felt such anxiety over the next step for Erik’s treatment, and this is amid such amazingly good news that his bone marrow is really squeaky clean, at least at the spots they checked! Although we still do not know the results of the bone marrow sent to Dr. Seeger’s lab 12 days ago, I found out yesterday by accident that a sample was sent there last month, on August 15th. That bone marrow result was sent to a doctor at U of M on the 26th of August, and it slipped through a crack. No one ever told me or Dr. Kobrinsky or Dr. Sondel the result of that marrow. It just sat in a pile somewhere at U of M.
It was negative for NB, meaning NO Neuroblastoma cells were found per million bone marrow cells, even though the pathology stains were read as 1 to 2 percent NB. My amateur interpretation of that is that the stains could have revealed well-differentiated cells just like last week’s marrow, and under review they might have labeled it ZERO NB also.
Regardless, this means we just wasted a month thinking Erik could get in the antibody therapy, when we could have known almost a month ago he would not qualify.
So while I should be ecstatically happy about the clear marrow, I am fuming we wasted so much time and are back to square one trying to figure out what to do next. I need to hand this whole thing over to God, and let Dr. Kobrinsky do the fuming. I’ll just try to concentrate on being happy about the currently amazingly miraculous response, NO EVIDENCE OF DISEASE.
The “multimodal” approach is so attractive to me, because so far all we have done is blast Erik with chemo, which incidentally causes cancer, damages organs, and makes him feel pretty lousy. So the immunotherapy seemed like such a great way to rid Erik of the rogue remaining cells that cannot be detected, but are surely there. But no, now we have tough choices to make once again. Mostly chemo, big or little. Stem cell transplant, or mouse antibodies in NYC. (Mixed bag of opinions on that one.)
I went over the options one more time with Erik, and he wanted to hear what Dr. Kobrinsky recommends. I emailed him and he responded right away. He wants to do three more rounds of inpatient chemo, and then follow up with cis-retinoic acid or fenretinide. I wish we could just do the fenretinide right away instead of risking more organ damage with three more rounds of chemo. And it will be nasty stuff.
But Erik wants to go with Dr. Kobrinsky’s plan. I’ll be praying for protection for his hearing and organs. And continued remission.
So Erik will get one more week of feeling great, and start chemo on the 27th. Dr. Kobrinsky wants to do another bone marrow that day (I do like his aggressiveness with constantly checking that marrow—Erik will have two marrow biopsies between chemos!)
You know this really is easier than having a 6 year old you cannot ask, “Honey, you want this chemo or that mouse antibody or this transplant regimen?” I just keep having flashbacks, and forgetting Erik IS 20 years old and he can wade through all the pros and cons of each idea and chose for himself. He wants to know what I think, but everyday I feel more like saying exactly what we have been hearing over and over since this began, “No one knows what is the best thing to do in this situation.”
But God is still in charge, and heals in spite of us and our ignorance!
So my main job is to pray, and I’ll be joining you prayer warriors in full force.
Christy Munson sent this today (oh how it helped me!)
I purpose to keep my focus on the Healer and Creator, and wait for Him.
Waiting on the Lord
Psalm 62:1, 5,
My soul waits in silence for God only. From Him is my salvation. My soul waits in silence for God only. For my hope is from Him.
Lamentations 3:25-26
The Lord is good to those who wait for Him. To the person who seeks Him.
It is good that he waits silently for the salvation of the Lord.
Psalms 40:1
I waited patiently for the Lord and He inclined to me and heard my cry.
Psalm 27:14
Wait for the Lord, be strong and let your heart take courage. Yes wait for the Lord.
Psalm 25:5
Lead me in thy truth and teach me. For Thou art the God of my salvation.
For Thee I wait all the day.
Hosea 12:6
Therefore return to your God, observe kindness & justice and wait for your God continually.
Psalm 130:5,6
I wait for the Lord, my soul does wait, and in His word do I hope. My soul waits for the Lord more than the watchmen for the morning. Indeed more than the watchmen of the morning.
Psalms 69:3
I am weary with my crying, my throat is parched, my eyes fail while I wait for my God.
Psalms 27:14
Wait for the Lord. Be strong and let your heart take courage. Yes wait for the Lord.
Psalms 62:7, 8
On God my salvation and my glory rest. The Rock of my strength, my refuge is in God. Trust in Him at all times, O people, pour out your heart before Him, God is a refuge for us.
Waiting on the Lord,
With crying.
With soul,
Silently,
Patiently,
Fearlessly,
Continually,
Confidently,
With great hope.
On God my salvation and my glory rest.
I should be enjoying the gorgeous days we have had this week (I tried), and filled with wonder over what God is doing (I tried). But I cannot think about much other than we still don't know what Erik's bone marrow test results are...and only emailed three different doctors today (I held off a long long time don't you think?), hoping to light a fire some where. I resisted the urge to call the lab since I got chewed out for calling last Thursday. They have had the bone marrow 10 days now...
I just hope someone is keeping track of elapsed time since Erik's last chemo. Next week is "week five" and chemo is done on three week schedule. That means two weeks, no treatment. I should be relaxed about that? The part that makes me a little crazy is that Erik may need another bone marrow test to actually get in this trial (hints picked up from here and there, cryptic statement made by Dr. Seeger in an email, etc) No one has mentioned how long it takes to actually do the other tests required to enter the trial, or how long it takes to get the antibodies to U of M. And as of right now, we don't even have an appointment next week.
Okay I feel better now. I am so glad Brandi and Erik are at Camp Sunshine. I would have driven them mad by now.
Erik called tonight! ABC news interviewed him and he was on the 6 o'clock news! I hope he can get a tape.
I am so proud!
Surely there is an important point to this waiting. Pray that God shows me what it is, and that I am paying attention when He does!
No word yet on the bone marrow sent to Dr. Seeger's lab in Los Angeles one week ago. Guess I get to wait some more. I think Erik needs another bone marrow sample sent there if there are 5 or more neuroblastoma cells per million...but guess I have to wait to find that out too. If he is eligible, Erik will go to U of M to see Dr. Neglia to enroll in the antibody-cytokine fusion protein study.
I am trying to think about school. Lesa is taking piano, Greek, art, and considering adding sign language. She actually thinks long-division is fun. Aron is reading everything! Wow, no one gets much credit for him learning to read before kindergarten. He figured out most of it on his own. His favorite activity is dot-to-dot.
Karl is doing great so far with community college in Detroit Lakes. Even the part about getting up early! Classes begin at 8 am every day, and he is taking 17 credits. He drives 60 miles round trip, and he just found someone to share driving with. That will help on the gas bill!
I can't wait to hear about Camp Sunshine! I am sure Erik and Brandi are having a blast. More soon!
Thanks for praying. It is infinitely better than worrying.
Dr. Kobrinsky called with the bone marrow results first thing this morning. “Erik still has 1 percent tumor in his marrow.”
The frustrating thing about this is that the last round of chemo should have been changed, but we didn’t know until mid-round that his tumor was holding steady, instead of decreasing.
NOTE TO SELF: remember to tell oncologists to do bone marrow biopsies at least two days BEFORE chemo starts! Ugh, I SHOULD have known to insist on this. So much was happening during and after the stem cell harvest, this very important detail was forgotten about…
So Dr. Kobrinsky said it was our decision about Erik going to Camp Sunshine. He said the Neuroblastoma won’t wait, but we have to look at the big picture (quality of life and all that). He wants to use some really ugly stuff (cisplatin and doxorubicin) for the next round. Concerning the decision to go to Camp Sunshine, he said “I can’t tell you what to do.”
Camp Sunshine is a camp for kids with cancer and their families in Wisconsin. Erik and Brandi want to serve as volunteer counselors.
Erik and Brandi decided to go, but it was not an easy decision. Brandi went and laid on the trampoline by herself to pray about the decision to go to Camp Sunshine. Dr. Kobrinsky would have admitted him today for chemo if he decided to skip Camp Sunshine.
I decided I need to pray more and worry less.
Then Dr. Kobrinsky called again.
He said, “I have some interesting news.” Turns out the pathologist reviewed the synaptophysin positive cells, and they are not neuroblastoma. They are normal cells. Erik’s bone marrow is “morphologically clear”! Erik will not get the nasty chemo! Praise God!
And again I say PRAISE GOD! Shock and AWE!
A sample was sent to Dr. Seeger’s lab in CA, and the results of that will determine whether or not Erik can be enrolled in the hu14.18-IL2 fusion protein study (immunotherapy). If Erik has less than 5 NB cells per million, he cannot get the therapy. His only choice at that point is another transplant, which we are still very unhappy about the lack of choices for safe transplant.
For the Neuroblastoma-uninitiated, this might seem like a ridiculous amount of treatment for a person who has no detectable disease! The problem with this cancer is that it comes back. It is the little tiny bit that can’t be detected by any test, that grows back. Most kids who have high risk Neuroblastoma relapse. And when it does, usually there is very little that can be done. That is why relapsed Neuroblastoma has a documented ZERO PERCENT survival rate. Maybe that is why I worry. But all I need to do is pray.
And I was wrong...the last chemo did not have to be changed...see? God is in charge!
Dr. Neglia from the U of M called yesterday and suggested we wait until after Erik's next round of chemo before we come there to begin tests to enter Erik in the immunotherapy trial. How nice of him to save us the trip! All of us are glad for that.
He was extremely nice, and wasn't put off by my longish email asking lots of questions. He remembered all about Erik. Turns out he was the first oncologist Dr K consulted with when Erik relapsed. He gave his opinion on what should be used for the next round of chemo (carboplatin and etoposide) and alleviated some of my anxiety about Erik losing more hearing. He hadn’t heard of using sodium thiosulfate with carbo to protect hearing, only cisplat. So we’ll see what Dr K wants to do.
The good news is that he says it would not be a problem even if Erik’s bone marrow looks WORSE for him to put off chemo one more week, so that Erik and Brandi can be camp counselors next week at CAMP SUNSHINE (just started in Wisconsin)! They are incredibly excited about this opportunity to work with kids with cancer and their siblings. We went to Camp Sunshine in Maine in 1993, and it was a blast. Erik remembers it well, and is very excited about connecting with the kids who he identifies so much with! And no one is better with kids than Brandi. Kids naturally flock to her. They will have a blast! We do have to double check with Dr K, since the next chemo will be in Fargo. Hopefully he will agree. Erik feels so well now (will be a total of five weeks between chemos) he will have the time of his life, and no appointments/meds/blood needed for him during the entire week! They have a skate board park, and Erik will camp out with his assigned group of boys. They will actually go a day early so they can help the camp coordinator set up! Do you detect I am just a little excited for them too?
Meanwhile, AWANA starts tonight, I’ll be back in with the youth group, and Karl has joined the youth group worship team on keyboard. Lesa and I start Greek class again tomorrow. Since they continued through the summer, Lesa and I are WAY behind, and have some cramming-catch up to do today!
We are so VERY thankful for everything. God is so good! I am so amazed at the ways He blesses us every day. There are so many precious children suffering so terribly from this dread disease. Neuroblastoma claims hundreds of children every year (15 percent of all childhood cancer deaths, and cancer is the top cause of death from disease for children), and most of them never make it to kindergarten. God has given us so much! Please cherish your precious ones, and pray for those suffering children and their families.
Recent events leading to the decision:
Last Thursday Erik went to Fargo for blood and platelets, and again on Monday. Yesterday we went to meet with Dr. Kobrinsky, after exchanging many emails with doctors all over the map. After meeting with Dr. K, I spoke with Dr. Verneris one more time on the phone. I feel bad about how hard he worked to get the protocol approved in time for Erik, only for us to decline. He is exceedingly gracious, and supportive of our decision.
Dr. K was great---totally worth the three hour drive to talk to him. He only snipped at me once in the hour-long meeting (I’ll spare you the details on that one!) We hashed out every choice for the next chemo, and whether or not he thought Erik should go for the proposed transplant at U of M. He agreed it is too risky of a chemo regimen. He called a transplant physician at Mayo (right in front of us) and asked her what transplant regimen they would offer Erik. Mayo would only offer an allogenic transplant. At the end of the conversation, she said something, to which Dr K responded “Then we’ll pray.” I wonder what she said.
The transplant choices offered right now are too risky. Dr K agreed Erik should enter the immunotherapy trial since he is eligible now, it happens to open now at U of M, and transplant is still a future option if the immunotherapy doesn’t work. Immunotherapy is still experimental. It has not cured anyone in relapse, and is not used as standard care for new diagnosis. This is why we are begging God, please let it work on Erik!
Erik will have a bone marrow biopsy on Tuesday in Fargo. Then he goes to U of M for a meeting with the oncologist there to plan for entering the Phase II hu14.18-IL2 immunotherapy trial. Depending on the results of the biopsy, he’ll get another round of chemo (there or in Fargo), and then enter trial. There is a possibility they will admit Erik into the trial immediately, and he will get the antibody instead of chemo. We’ll see. It would be nice if he could have less tumor in his bone marrow. One percent sounds like a small amount, but to enter this trial he only needs 5 or more Neuroblastoma cells out of a million.
The antibody treatment theoretically can cure him. The problem is, the cancer cells can mutate and drop the surface antigens that the antibodies require to find and destroy them.
Please pray with us that this works.
Here is a poem Erik wrote yesterday:
Father, Father, hear my plight,
Please watch over me at night.
Guide my feet during the day,
Keep the evil one away.
Set my suffering at ease,
Help me love my enemies.
And if today You let me die,
My Lord to You I know I'll fly.
NDSU students, please spread the word about Erik. He was diagnosed and moved out of the dorm during finals week, and had no chance to let any one know what was going on last May. He'll be back in Fargo (MeritCare on Broadway) for chemo next week if his counts start improving on their own.
More soon!
God is infinitely bigger than this.
I am still researching, and a little frustrated (to put it mildly) that some promising low-toxicity drugs are next to impossible to get. I have not given up yet. I am reading up on all the ways the FDA and institutions allow doctors access to new drugs, or old drugs for new purposes.
Still haven't heard anything about the next chemo (what, where, when). Not sure if we should consider doing everything at U of M. Tough decision. We appreciate prayers for wisdom.
I am convinced Jesus provides abundant life in all circumstances! His power and purpose are evident everywhere.
I praise God He is in charge!
CLICK ON FIRST LINK BELOW FOR BENEFIT PHOTOS...SLIDE SHOW! I will add more "albums" to the site soon.
Erik feels much better after three bags of blood and platelets. The hospital was nice about discharging him late this morning. He is tanked up now. Brandi and Erik went shopping and to a movie in Fargo.
I still haven't heard from Dr. K, but Dr. Reynolds has been great about giving input. He sent me two research papers today supporting his position. I need to cut Dr. Verneris some slack, he is on vacation this week after all.
Since Aron is getting frustrated trying to read what I am typing, I will update more when we have news on what is next for Erik.
Check out the benefit photos, I'll try to figure out a way to put more photos on this site. I need to pay Dylan's mum Melissa Hartung a visit (NYC) so I can get lessons on how to get around all the limitations on this site!
Blessings!
Erik and Brandi didn't last too long at Valley Fair yesterday (I won't say it). They went on one ride and went back to the bus to rest. Erik probably should have listened to me and skipped the 7 hour round trip bus ride! Poor kid. At least he is more optimistic than I am, and thinks he can do it!
Today, as I expected, his counts plummeted. His platelets dropped from Monday's 55 to 12, white cells from 20 to 1, and hemoglobin from 9 to 7. So they went to Fargo and he was admitted to the 7th floor (oncology floor) to get red cells and platelets. Since they didn't get there until 3 pm, I told Brandi to insist they run it slow and discharge him in the morning so they don't have a long drive in the middle of the night. They have done that too many times!
I haven't heard back from Dr. Kobrinsky about the next chemo. He is gone until next week, so we won't know anything unless he emails me.
Check out our little cyber friend Dylan (from Australia) fighting neuroblastoma in NYC, with Nicole Kidman.
http://celebrity.aol.com/people/ataol/galleries/0,19884,1094575_3,00.html
Isn't he handsome? He is the same age Erik was first time around. Dylan has been in NY fighting since last January. He is a very brave boy!!!
PRAY!!!!!!!!!!!
We are still on Cloud Nine from the benefit. What an outpouring of love! It is so hard to absorb it all.
Today Erik and Brandi went to Valley Fair with the church youth group. I hope Erik holds up! He looked pretty pale yesterday. Tomorrow he has counts.
I spent a couple days researching and emailing some very tolerant doctors. I am sure I have the reputation of every pediatric oncologist's worst nightmare by now. I am very impressed by the kind, thoughtful responses I have received, especially from the BMT doc at U of M. Dr. Sondel from Wisconsin called me yesterday and gave me some good input. I am waiting for Dr. Kobrinsky to give his impression of what to do next.
Next chemo has to be changed (haven't decided yet what it will be, chemo is due Sept 5), and by the end of September we'll know if Erik's tumor is definitely chemo-resistant. If it is, he'll enroll in the immunotherapy trial at U of M or U of Wisconsin. If he is still responding to chemo, he'll go to transplant as soon as possible. The docs differ in opinions about how much tumor should be in his bone marrow before transplant (Dr. Reynold's at USC says not to wait, Erik should head right away to transplant even if he has 1% tumor). They also do not agree about the best agents to use for transplant. BSO/L-PAM would be my choice (effective, relatively low toxicity) but it not available now in the dose Erik needs, and Erik could not get it at U of M. Dr. Verneris wants to use busulfan/melphalan/thiotepa plus TMI which is fairly toxic...15% die of veno-occlusive disease, and those did not have prior transplant and LOTS of radiation to the liver. Needless to say I am really nervous about this proposed regimen. The low dose TMI sounds promising...but Erik would have to get the whole package. Reynolds thinks we should use high dose topo/cyclo, which also would not be available at U of M. The case manager for our insurance called and reminded me they WILL NOT pay for phase I trials, so we'll have to fight anyway. There are no standard protocols for transplant after relapse.
The fenretinide phase 2 trial just closed, so Erik would have to wait until the phase 1 new liquid formulation of fenretinide is open, and that might be a good therapy after the immunotherapy.
Tough decisions.
There is a free retreat next week for young adults with cancer. Only problem is, it is in Saint Johns, Newfoundland! I checked into flights. Whew, really expensive. I am waiting back to hear from different organizations that offer free or reduced flights for these purposes. The social workers at the cancer centers can find funding occasionally, so we'll see. Dr. K hasn't said yet if he thinks Erik should go that far with no access to medical care.
If that doesn't work out, Erik and Brandi can volunteer at Camp Sunshine in Wisconsin the week after the next chemo. We went to Camp Sunshine in Maine when Erik was going through treament...it was great! They said they would give Erik an easy physical load, and they would love to have them volunteer. I think they would have a blast.
So, that's all the news for now. Lesa has a birthday coming up on Saturday (10), Karl started school at the community college, and I need to plan school for Lesa and Aron. Paul has lots of computers to fix. I guess life goes on.
God is good!
Last night's benefit for Erik was absolutely overwhelming. I have felt overwhelmed from the start--- that so many people would love us so much, and persevere in prayer and support for us.
But I feel there are so many people who need that kind of support and deserve it so much more than we do! Why should so much love be lavished on us?
I can’t help but think of the profound analogy of what God has done for me. He loved me when I was a worthless sinner, and Jesus gave His life to pay for my sins, something I am completely unable to do myself. I don’t deserve His love and blessings, yet He has lavished and continues to lavish blessing upon blessing in my life. His love is boundless, abundantly beyond all I ask or think. My thanksgiving to Him is pitifully inadequate to express my eternal gratitude.
Likewise, I cannot express my thanks to all of the amazing people in my life, who have labored indeed to hold us up through this time. God only can bless and enrich your life for your kindness to us. I wish I could do more!
Erik and Brandi made it to the benefit (he finished chemo at 1 pm in Minneapolis and they drove 4 hours home), and he was feeling very well! He was shocked that so many people came.
It was great timing. I was in the dumps since the news about the tumor in his bone marrow. Three people reminded me to keep my eyes on Jesus, lest I go for a swim like Peter almost did!
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Check out the photo album:
The second photo is of Aron, Lesa and Rowan making candy penguins and sugar cube igloos. They went ice skating, made ice cream, and after we left, they took the kids to see March of the Penguins on Friday. They also went to a pottery place and made pottery, glazed and baked!
The third photo is Aron with his new friend Edmond, from South Africa.
And check out the letter from Tim Pawlenty, governor of Minnesota! I am very curious how he heard about Erik!
Erik's bone marrow has 1-2 percent tumor, with some cells in the aspirate (which was previously clear). This means NO he is not ready for transplant, and that chemo must be changed to get rid of remaining tumor. This could be interpreted as growth on topo/cyclo, but reading these slides is not quite that exact of a science. Either way, he must be free of tumor for a decent chance of surviving this disease and not relapsing after transplant.
Tentatively we will leave here on Friday, get to the benefit as fast as we can, get a neulasta shot on Saturday (they are working on insurance to allow us to give the $4500 shot at home instead of driving to Fargo for the silly shot!)
He will then return to Fargo for chemo, possibly etoposide and carboplatin or cisplatin. I have been trying to avoid the platinum compounds because of more hearing damage, and the fact that Erik's tumor didn't respond well to cisplat at diagnosis in 1991. Chemo options at this point are limited.
Dr. Verneris is contacting Kate Matthay in San Francisco to see if she has any suggestions, and we'll go from there.
Today he is getting blood, possibly today and tomorrow. So far he is tolerating the chemo pretty well.
Thanks for your prayers...we need lots more.
Today Erik has completed day two of five days of chemo. He had a bone marrow biopsy yesterday (his fifth since May), and tomorrow we should hear the results. There may be more detailed results from Los Angeles next week, but we don't know for sure if they will do more sensitive tests for neuroblastoma on the bone marrow biopsy. The BMT docs will decide if Erik is ready for transplant based on what they learn tomorrow. Then we may have a time table to plan around for transplant.
He looks pretty pale today, and may need blood tomorrow. He is really tired today, and feeling a little sick. He hates the under-the-tongue zofran. I should have asked for regular pills. They didn't give him Aloxi this time. Too bad, it worked pretty well for the last two chemos at keeping him nausea-free. We are still giving him IV antibiotics every 8 hours. He is a good sport, dealing with all this so well! He is pretty pampered at the clinic while getting chemo.
Aron's dear friend Edmond left yesterday. He is from South Africa, and he has been here 14 months for his little sister Rose, who is being treated for cancer. She was in the room next door to Erik when he was in the hospital. She is so cute...only 3 years old. When I get home I'll post the photos taken here. Edmond and Aron were such good buddies! Aron is crushed that Edmond left. He cheered up when I told him we will keep in touch with Edmond's family!
Lesa and Ruwan are having the time of their lives. They have gone shopping, ice skating, and many other places. They have done crafts together, and play so well together.
When Karl and Paul were here, they went to see a Viking's preseason game! They loved it. I thought Erik would like to go, but he opted for shopping at the Mall of America with Brandi, and they had a great time. On Sunday, Brandi and Erik went to the hospital to visit Steve, and they got to meet Libby, Steve's fiance! They had a great visit. Keep praying for speedy healing for Steve, and smooth transition to using a prothesis.
We are looking forward to coming home on Friday for the benefit. We'll get there by the skin of our teeth, I'm afraid, since chemo finishes about 3 pm on Friday, and it is a 3.5 hour drive, with half the residents of the twin cities heading that direction for the weekend...ugh! Hopefully we can make it before it is over!
I'll post an update tomorrow...if we get some news!
Pray!
Yesterday morning, before the third and last day of harvest, Erik gave himself 4 ml subcutaneous high dose gcsf to see if the IV gcsf had anything to do with the pain he experienced the previous two days. Everything went exceptionally well, and NO PAIN episode, just a little sore. What a tremendous relief to have that behind us. I really didn't think this harvest process would be any big deal!
I haven't heard the count yet from yesterday's harvest, but I bet it is good, after the first and second day were 40 percent more than hoped for! Yesterday's harvest will be frozen and kept here...not purged. I would love to know the amount of NB in the stem cells that are staying here. The BMT doc was unsure that could be determined here.
Today Erik had a bone scan and then a CT simulation of the total marrow irradiation, also called tomo therapy. The radiation oncologist is very nice. She spent loads of time with us, and showed us the tomo machine they acquired in Feb...to the tune of 2.7 million dollars. She said Erik is a perfect candidate for this therapy, and I am happy about the low dose. The protocol was just approved last week, and Erik will be the first patient on this protocol. They haven't finished writing the consent forms...we should get them next week, and then I'll be able to ask more questions.
Negative cultures from two days ago means ERIK WAS SPRUNG today around 5 pm. He is back at RM house, and Paul and Karl and Brandi are coming tomorrow!
The coolest thing is just after he was discharged he finally got to visit with Steve. I am so happy Steve wanted to see Erik...his surgery was so recent. Erik said he was GREAT! He is bright and chipper, still on quite a bit of morphine, but really nice. Erik got to talk to his parents too.
Erik is on "home" IV antibiotics for the line infection and will be for 8 more days. The home infusion nurse came to the Ronald McDonald house to show us how to infuse the antibiotic...pretty simple.
The interesting development now is that the BMT docs decided to keep Erik here for the next round of chemo so they could do the next bone marrow here and see how much tumor is left in Erik's bone marrow.
He goes to the BMT clinic tomorrow morning and they will arrange to give him his chemo (topotecan and cyclophosfamide) there next week, starting Monday after the bone marrow biopsy.
PLEASE PRAY THAT THE BONE MARROW IS COMPLETELY CLEAR OF TUMOR!!!!
If so, they may be able to go straight ahead with work up for BMT, and we can skip the next chemo and make it transplant instead.
Something to pray about.
And Lesa's eyes look perfect! Aron and Lesa went bowling today and enjoyed it very much.
I appreciate the outpouring of love we have been so blessed to receive since this whole thing began. Instead of waxing and waning, the love and support has swelled to a magnificent level...thanks so much faithful friends!
Yesterday was unreal.
Erik began the day with excruciating chest pain right after the GCSF was infused. They gave him 3 mg of morphine before he went to the donor center for the second day of apheresis (harvest). The pain subsided after a while and he slept for the entire 5-6 hour process. The radiation oncologist who wants to give Erik the tomo therapy (total marrow irradiation) as part of his transplant came and talked to us about it in the donor center. At 3 pm he was done with the harvest day 2, and the pain started back up again. It gradually got worse and worse until he was in unbearable pain. He couldn't talk and could hardly breathe...it was a nightmare. Everyone was buzzing around trying to figure out what was causing the pain. They FINALLY gave him some morphine after 2 hours of escalating pain. Unfortunately it was too little, too late. One resident was sure it was heartburn (reflux) and gave him maalox. He of course didn't stand around long enough to see Erik writhing in pain to see how bad it really was. They gave him 3 mg of morphine again, plus ibuprofen and tylenol, and at 8 pm the pain had finally subsided. They did an EKG and tested for tropofin (sp?) for signs of heart attack, but that was normal, thankfully.
We are HOPING it is the gcsf that caused the pain and nothing else horrible is going on, BUT this acute unbearable pain is unheard of with gcsf. No real answers. Since this morning he got his last dose (shot instead of IV) let's hope there is no more incidence of pain. He has been loaded with bone metastases TWICE and the pain was nothing like this.
He was supposed to go for a CT simulation to plan the radiation this morning, but with all the gcsf issue, he didn't make it. He is in the donor center now harvesting last day's stem cells, and they will freeze today's batch and keep it here for back up.
Last night they sent 13.65 million cells/kg to LA for purging from day 1 and day 2 harvest. This is a GREAT yield, since they wanted 10 million cells/kg for the purge process. They agreed to take the cells even with the positive cultures...they will treat the cells with antibiotics and culture them again, and of course he will be on antibiotics during transplant, so they are not too concerned about it, which is a huge relief.
Erik will be so glad when he is done today with harvest!!!!!!
BUT he will not be discharged today because he still has positive blood cultures from his line. I have NO idea yet when he will be released, but they will have to send him home on IV antibiotics for 10 days. I am concerned how this will affect next week's chemo, which is already a week late.
Yesterday his hemoglobin was an all-time low...6.8 and so he got blood last night after the pain thing was all over. He got a nice bump to over 9. I am sure that makes him feel better! We took him an orange julius to the donor center and that made him happy. He is exhausted, but in good spirits.
Today after the harvest is done, he may be able to get the CT simulation done. If not, it will be tomorrow at 1 pm.
As if all that wasn't enough, yesterday Lesa woke up with both eyes glued shut with green goo. Pink eye puts you in a VERY unpopular category at RM house...60 percent of the residents are dealing with BMT and are seriously immune supressed. The BIG bummer was no boat ride/swimming outing for Lesa and Aron with the volunteers, which was a pretty big shindig. That was supposed to free me up to be with Erik! Instead, I got to take Lesa and Aron to the emergency room to get antibiotics for her eyes, and drag them around the hospital all day. She saw Erik in pain and was crying uncontrollably because there was nothing anyone could do to help him. It was awful! The nurses in the donor center were having a fit she was there, because they need to keep infectious diseases there to a minimum too!
She is much better today, and the medicine is working well.
SO today they will tie-dye shirts after lunch, which I need to get them too now.
Are you worn out reading this? I sure am!
1. How many cells they collected
2. Will the lab in LA accept them for processing with positive cultures? The consent form says NO!
3. Will the lab in LA test the cells FIRST for neuroblastoma cells before purging?
I guess they will wait until all three days of harvesting are done before they will send the cells to LA. The part that bothers me is agreeing to purge if it is not needed (ie the cells have no detectable NB). That doesn't mean there is none because it can't be detected (the most sensitive test can detect 1 cell in 100,000 by immunocytology) but that it is pretty clear. Minimal residual disease has to be treated anyway.
We will see the radiation oncologist tomorrow after harvest.
Erik is still in the hospital, in a little better spirits, and was a TROOPER for the stem cell harvest. I wouldn't want to sit there all day with a huge needle in my arm I can't move!
Lesa and Aron went to see Sky High with Ronald McDonald house volunteers, and tomorrow they are going on a boat!
Lesa and Ruwan went to see the Lynks play basketball in a suite box last night! Two really lovely ladies (one lost her daughter to brain tumor a year ago) took Lesa and Ruwan's family on the city bus to the game. They got autographs and free food. She had a blast. Today GE came and cooked burgers and set up water games.
Please continue praying for Steve. He is a couple doors down from Erik on the same floor. He is recovering from leg amputation last Friday. Good news, the surgeon was able to save a little bit of his femur and attach a bit of shin bone to it so he will be able to use a prothesis after all. He is having a great attitude about all this. Erik hasn't been able to see him since it so soon after his surgery, but Steve knows Erik is on the same floor.
Took Erik to emergency room yesterday for fever after the morning clinic visit for GCSF.
They gave him antibiotic and drew blood to culture...
...which we found out this morning at clinic was positive, so they admitted him to the hospital to give him another antibiotic and drew more blood to culture (both lumens and peripheral blood)...
...so now we wait to see what will happen with stem cell harvest. They won't do harvest until cultures are negative, unfortunately this takes time to confirm,...meanwhile the "window of opportunity" for stem cell harvest slips away if they wait too long...
Erik has felt really lousy for the whole time we have been here, no appetite, crabby (!) and basically in bed 24/7-- so the nurses are trying to get him up and moving. He had a really bad headache yesterday after the fever subsided a bit. I am getting my exercise just trying to keep track of Aron and Lesa, and running back and forth to the clinic, hospital, and RM house. Brandi we need you! WOW am I glad it is two blocks and not 8!
More later...
RM House room 131 phone (612) 379-3991
Fairview Hospital room 34 bed #2 phone (612) 273-0343
Sorry, can't change the photo from here...I hope readers check to see the text has changed in this update! :)
This Ronald McDonald House is AWESOME. A gentleman told me last night it is 65,000 square feet! I believe it...we have only seen a small fraction of it so far. There is even a gym in one of the basements, a movie theatre, playgrounds, several playrooms, etc. It is GORGEOUS!!!! Our room has a spiral staircase up to loft where there are two extra beds---perfect for Lesa and Aron. I have a feeling a lot of kids would like to stay here permanently! A Jewish women's charitable organization called Haddasah came and made dinner for the entire house (for 48 families) last night--- it was an unbelievable gourmet meal!
Needless to say, Aron and Lesa are having the time of their lives. They also have all kinds of activities for the siblings. Aron and I went to Target and got groceries (a volunteer drives a van from here to shopping center twice a week) while Lesa and her new friend Ruwan played Bingo. They take kids swimming, do crafts, library trips, etc.
I just wish poor Erik felt better. He has severe flu-like symptoms from the increased GCSF, so he wants to stay in bed. His appetite is greatly diminished. I talked him into walking to the bmt clinic this morning, and he was exhausted by the time we got back. We are very disappointed that for the harvest on Mon, Tues, and Wed, they will have to place two large IVs each day and they won't use his DOUBLE lumen hickman for the procedure...it also means he cannot move his arms for 5 hours at a time (the apheresis machine operates at such high speeds and pressure, that any movement makes the machine stop.) How is he supposed to eat? ARGH. It just irritates me they don't think ahead. If he has to have a double lumen, knowing he was headed for transplant, why didn't they put one in they could use for this process? Turns out this one cannot handle the pressure (it will collapse), but they do have stiffer ones they could have used. So we will get a daily count on how well the harvest goes. They aren't terribly optimistic about harvesting enough cells...partly because they need to collect 10 times the number of cells normally needed if they are going to send it to LA to purge---the purging process wastes 90 percent of the cells.
Other than that, all is well. Lesa's new friend Ruwan just arrived from Egypt (Alexandria). She comes once a year for her brother Hassan's treatments. They were here for a year at one time! She is adorable, and Lesa and Ruwan have already become inseparable! Aron has met two nice boys his age, and is having a blast.
Thanks for praying for us, and please keep Steve in your prayers. His surgery was this morning.
He is so puzzled why Erik would relapse after all this time. We have no statistics to go by. Two autologous transplants rarely ever occur with a break between them of 13 years. Is that good? Probably, but adults do not fare as well as children in transplant. He is concerned we may not get enough cells. Guess we'll cross that bridge later if we have to. They would like Erik to enter a trial using TMI (total marrow irradiation) and so we will be discussing this with a radiation oncologist when we are there. This would take place immediately before the chemos BSO/melphalan and thiotepa for the transplant.
The TMI is a phase I dose escalation trial, and Erik would be the first to get this new type of radiation at U of Minn, so he would get the lowest dose. The idea is that organs will be minimally damaged, and since relapse is likely to occur in the marrow this should kill the tiny amounts that remain in his marrow. The disadvantage of getting the lowest dose on this trial is that there is a possibility the dose is too low and that it will do nothing. They escalate the dose for each new patient until they observe dose-related toxicity.
Meanwhile we are all set to stay at Ronald McDonald house on Thursday, and will leave Wednesday afternoon or 4 am on Thursday in order to get to U of Minn by 8 am. I should be able to update this site from there. We will be there until August 10th.
Let love be without hypocrisy.
Abhor what is evil.
Cling to what is good.
Be kindly affectionate to one another
with brotherly love,
in honor giving preference to one another;
not lagging in diligence,
fervent in spirit,
serving the Lord;
rejoicing in hope,
patient in tribulation,
continuing steadfastly in prayer
Romans 12:9-12
Please pray for Steve at U of Minn (his link is below). He is scheduled for surgery on Aug 5th to have his leg amputated at the hip. He was diagnosed with bone cancer three weeks before Erik. He is a student at NDSU also, and engaged to Libby. Please visit his site and pray for him!
What an encouragement when I hear back that people are reading this series of rambles and praying for us...I can't thank you enough! I am so blessed beyond anything I would dare hope for.
What a perfect summer day. I took Lesa and Aron to the lake and they played so well for three hours. Aron put a bucket on his head (like a helmet) and asked Lesa to dump water on him over and over and he laughed every time. Strange kid.
I sat there and soaked in the sun and gorgeous surroundings, and read Romans.
Karl has two more behind-the-wheel instruction days, and then the driver's test on Thursday. Erik has counts tomorrow, and we leave Wednesday for the harvest, which will take a week. Paul has more computer customers. Driving into town there are signs for Erik's benefit on the 19th and businesses in town received inserts in the Chamber newsletter last week (thanks to Robin, Dawn and Beth!)
On Friday the BMT clinic at U of Minn called and said they want Erik to have two more rounds of chemo (topo/cyclo) after the harvest, before the stem cell transplant. That was disappointing, since now the hopes of Erik being well enough for a November wedding are dim.
This whole thing has been a rough ride for Brandi and Erik. Most young couples don’t have this much to deal with while planning a wedding! Overall they have handled everything amazing well, but it has been hard. Please pray for peace and hope and joy for them.
Therefore, having been justified by faith,
we have peace with God through our Lord Jesus Christ,
through whom also we have access by faith
into this grace in which we stand,
and rejoice in hope of the glory of God.
And not only that,
but we also glory in tribulations,
knowing that tribulation produces perseverance;
and perseverance, character;
and character, hope.
Now hope does not disappoint,
because the love of God
has been poured out in our hearts
by the Holy Spirit
who was given to us. Romans 5:1-5
Tricare/Triwest has approved the stem cell harvest. We have to wait for the results of the work-up after harvest for them to approve the full-blown transplant. This consists mostly of organ function tests, bone marrow biopsies, and scans. No protocol has been decided on yet. It must be approved by Institutional Review Board, and since one set of slides was supposed to arrive yesterday, and one set today, it may take until next week to decide what they are going to do for transplant.
Ronald McDonald House in Minneapolis has GRACIOUSLY decided to make an exception for Erik to stay there, even though he missed the birthday cutoff by two months. Pushy Mom that I am, I had to call and ask one more time! The social worker just called and said Brandi can stay there too! (We found out each RM house has their own policies.) This is essential since she is the assigned “primary care giver,” which is a requirement for transplant. This way I will be able to go back and forth and serve as the support person. Whew, we really sweated that one! Other options were mostly ridiculously expensive OR having to impose on others long-term for accommodations.
"Now to Him who is able to able to do exceedingly abundantly above all that we ask or think…” Thanks be to God!
Today is our last day with David, Nicole, Josh, and Grandpa. We are so glad they came to visit! David finished three weeks of radiation treatment and then drove to Colorado Springs to pick up Grandpa, and then drove here, all in three days (each way).
Blessings to you…have a lovely summer day!
A lady at Children's Hospital in Boston said, "Sure! We have Erik's slides right here from his bone marrow biopsy at diagnosis and the slides of the tumor from his surgery. I'll send them FED EX to your doc at U of Minnesota right now."
Another lady at Roger Maris said the same thing, and she FED EXed the slides yesterday also.
I also asked a Roger Maris nurse if they checked for urine catecholamines at relapse diagnosis, since that was not in the 85 pages they faxed to Dr. Tolar at U of Minnesota, and she said, "It is right here," and read the numbers to me. They were all sky high. She faxed it to Dr. Tolar and I emailed him to look for it. That is useful information.
There is no mystery after all, Erik certainly has neuroblastoma again. (We couldn't help but hope wildly for a very curable lymphoma...)
A case manager for bone marrow transplant at Triwest called yesterday and explained the process for approving the transplant. Sounds pretty straight forward. She was also very nice.
The gentleman who has been working on the SSI for Erik said he was approved for "presumptive disability" and should have received notification already. Then he said a bunch of stuff in "governmentese" I couldn't understand. I will work on that later. The medical lingo is MUCH easier than the government lingo.
We are having a wonderful time with my brother David and kids Nicole and Josh (from New Mexico) and my Grandfather (from Colorado). We are meeting them at Itasca State Park today. What perfect timing, since Erik only needs counts done (and unlikely to need any transfusions) this week. Yesterday his counts were great! Platelets 155, hemoglobin 10.4, and white cells were 9.31 (that is from the GCSF shots). Brandi likes giving the shots more than Erik likes receiving them!
Thanks to all of you who check up on us and pray for Erik! We are all so grateful for your love and support! No one could do this alone. God mercifully hears your prayers for us.
Keep the posts and emails coming...we love to hear from you!
“Remember now your Creator in the days of your youth,
before the difficult days come…”
Eccl 12:1
Need a review? I think I do.
Erik relapsed during finals week at NDSU, diagnosed with recurrent neuroblastoma on May 12, 2005.
He has since received four courses of chemotherapy, had four bone marrow biopsies, PET/CT scan, MIBG scan, three echocardiograms, renal scan, lots of x-rays, 13 blood transfusions, 32 blood tests, spent 42 out of the past 76 days in the hospital or clinic, and three shots of neulasta, which I just found out cost $4594 each. He has received 30 different drugs so far, plus three nuclear meds for scans.
It has been pretty busy. We have driven about 8000 miles (including Mt Rushmore and Chicago), and eaten quite a bit at Subways. Paul has sanded and varnished the dining room floor and painted some window sills in between computer customers.
So that catches us up to date. Erik finished his fourth round of chemo yesterday (topo/cyclo). We have been having fast and furious communication with U of Minn about his stem cell transplant. Erik will get 12 shots of GCSF (granulocyte colony stimulating factor) and then go to U of Minn on August 4th. They’ll increase his dose of GCSF and then harvest on the 8th, 9th and 10th of August.
Meanwhile the doctors at U of Minn would like to see the pathology slides made at Erik’s diagnosis. They are not 100% convinced he has neuroblastoma. Here is the email note I received this morning:
“It is very difficult to confidently make the diagnosis of neuroblastoma
in a non-myc amplified, VMA/HVA non-secreting tumor that is not MIBG avid.”
So I will be trying to track down the slides (no idea how to do that, but I will figure it out) next week and get them sent to U of Minn. The chromosome analysis was done at Mayo, so I have to find out if they have the slides or Roger Maris in Fargo. I have also requested records from Dana-Farber and Children’s in Boston, and weeks have gone by with no response. Argh. The doctors at UMN would like to see what the original tumor characteristics were. This frustrates me so much how HARD it was to get documentation of things back in 1991-1992. I was mostly ignored when asking for copies of reports, and often told simply NO. Once I took the file and copied a radiology report myself. NOW look at the hassle of getting that information. If I had my own copies to begin with, I would not be spending so much time trying requesting records that take FOREVER to find.
The doctors cannot make a plan for transplant ablation regime without being confident of the diagnosis. There are very few protocols to choose from (they have two to consider).
Lesa and Aron sure enjoyed the Ronald McDonald house in Fargo. It was so nice! We went to get Chinese food on Wed night with Brandi (she went home to work and watch her sisters) and we saw one of the nurses, Jessie, from the oncology floor who enjoys teasing Erik. She was surprised to see him eating at an all-you-can-eat buffet midweek of chemo! Erik loves the attention.
My brother David, his kids Nicole and Josh, and my grandfather are coming to visit tomorrow! They will be staying with my sister Dawn, and we look forward to a bit of a reprieve (except for counts and hopefully no fever or transfusions needed) for Erik.
Thanks for checking up on us! Please pray for all this confusing mess. Pray that Erik is healed, wisdom for doctors, no dangerous effects from treatment, insurance approves treatment, Erik finds out about SSI and medical assistance, lodging arrangements at U of Minn, etc etc. You fill in the rest!
We had an unbelievably wonderful time in Chicago. We had a pleasant 10 hour drive each way. Everything about the conference was surreal. The hotel was GORGEOUS, the food OUTSTANDING, the speakers AMAZING…the other parents and families WONDERFUL! What a blessing to have meals with the doctors and quiz them endlessly! I wish it lasted longer! It was sponsored by Children’s Neuroblastoma Cancer Foundation, a very worthy cause! http://www.cncf-childcancer.org/
I could write 100 pages on the conference. Suffice it to say the timing was miraculous and we had the most important question answered about our next move with treatment. Dr. Paul Sondel (UW-Madison) spoke on immunotherapy, and his Phase II study opens next month. NOW is the time to know if Erik should enter that study because he is down to one percent tumor in his bone marrow and he cannot enter the study without evidence of disease (remission). We talked to Dr. Sondel after his presentation and he was emphatic that Erik should NOT enter his study since he is responding well to chemo. He thinks the stem cell transplant is a good idea since Erik had his first transplant 13 years ago. Erik may sail through it as well as a first-timer.
That clinched it for us. The only bias possible from the principal investigator of a clinical trial is FOR enrolling in the study. If he says no, that convinces me Erik should head for the stem cell transplant. The next big question is…will Tricare approve it? Since the timing of the stem cell harvest is critical after a round of chemo, we have to know NOW if they will approve the harvest, slated for next Thursday. At U of Minn they are hustling to get this submitted to Tricare for authorization. Unfortunately, Dr. Tolar at U of Minn did not know that Dr. Kobrinsky was recommending that we go there after this round (gap in communication). That has contributed to the “hurry and panic” mode. Add to that Dr. Kobrinsky has been out of town since last week, and won’t be back until Wed. Erik doesn’t realize it right now, but it is a good thing he has a pushy woman for a mom! He would be in for an extra round of chemo for no reason! Let’s hope that doesn’t happen.
So pray that this clears with Tricare in rapid fashion. The difficulty in all this is that this is NOT standard therapy for relapse. Tricare would pay for phase II or III clinical trial, but the difference is that Erik is such an unusual case, not a typical relapse.
So now Erik is in Fargo getting 5 days of all-day topo/cyclo. I will come with Lesa and Aron and hopefully we can stay at the Ronald McDonald House for Wed and Thurs night, and bring Erik home on Friday evening. Then we’ll give Erik shots everyday to stimulate the white cells, and next Thursday he’ll have the stem cell harvest at U of Minn.
Meanwhile, Karl left yesterday for youth group mission trip to Montana---I was supposed to go too---to serve Native American children with a week of camping and VBS. Please pray for them too! Karl will turn 16 on the trip this Saturday. I neglected to set up his behind the wheel training so he may not get the coveted driver's license for a few more days upon his return...ooops!
Thank you for your persistence in prayer for Erik.
My soul, wait silently for God alone,
For my expectation is from Him.
He only is my rock and my salvation;
He is my defense;
I shall not be moved.
In God is my salvation and my glory;
The rock of my strength,
And my refuge is in God.
Trust in Him at all times, you people;
Pour out your heart before Him;
God is a refuge for us.
Psalm 62:5-8
NOW APPROXIMATELY ONE PERCENT TUMOR CELLS AFTER ONLY 3 ROUNDS OF CHEMO!
Thanks to all who are praying faithfully for Erik. This is a dramatic response in the setting of relapse. This does not guarantee Erik's future (in God's hands, always has been) BUT this is CERTAINLY good news and we are moving in the right direction!
MIBG was negative, as we expected, and no renal scan results yet. Because the MIBG was done when the disease is not detectable on MIBG, we do not know if Erik's NB is MIBG-avid. So he will NOT have the MIBG radiation. We are now down to stem cell transplant and antibody therapy. I am glad we can cross MIBG radiation off our list for now.
Tough choice about the next chemo. Use first chemo again, or topo/cyclo? Dr. K decided since the topo/cyclo took the tumor down from less than 5 percent to 1 percent, and was less toxic for Erik (outpatient, not very sick) he should have one more round, and Dr. K will contact Dr. Tolar at U of Minn for stem cell harvest plans right away. They will do the next biopsy there and check again for chromosome abnormalities (a way to determine if there are still tumor cells you cannot find under a microscope).
The accuracy of biopsies is not perfect with minimal residual disease, which is the culprit in relapse. There is no way to know if his bone marrow is REALLY "clean." The hope is that the massive chemo for transplant will wipe out the remaining, and then when his immune system recovers, he will have other therapies/drugs that will go after the remaining chemo-resistant tumor cells.
The best news is Dr. K decided to put off chemo until Monday, even though his platelets will be high enough to start tomorrow, so Erik and Brandi will be able to go to Chicago!
All of us went to Fargo for the appointment yesterday. Erik and Brandi went to the renal scan at 8 am then listened to music and took their mmusic final. Paul finally met Dr. Kobrinsky (after two months of this!) and Dr. K was very nice and answered everyone's questions thoroughly. Since Erik won't get chemo, we all came back. I'll try to get in the Ronald McDonald house next week with Erik.
That is the only down side to this outpatient chemo, you have to find your own lodging and food! And six days is a bit long (5 for chemo plus neulasta).
I had a very helpful discussion with a gentleman in Colorado who deals with the contract for Tricare, and he gave me some good ideas for finding out what is covered and what is not covered. More digging to do about that.
We'll let you know what we think of Chicago!
I watched Brandi's sisters and took them with Aron and Lesa swimming at a nearby lake for most of the day. Much better than sitting here sweating. I probably should have stayed home and attempted to accomplish a few things since I will be gone for the next 6 days, but I suppose it'll all still be here next Monday.
Brandi and Erik left at 5:30 am to get to the clinic in Fargo for blood test and renal scan and bone marrow biopsy. He cannot eat or drink before the biopsy, but was supposed to be "well-hydrated" for the renal scan. I wondered about that combination, and asked them about it last week. At Roger Maris the nurse said it would be no problem. Well today the nuc med people told him to come back tomorrow morning, well-hydrated. So they have to hustle in for the renal scan at 8 am and then go listen to World Music and take the final for one of the classes they were given an I (incomplete). They are studying tonight. As if either of them really care about World Music right now.
Paul and I will meet them for the appointment with Dr. Kobrinsky at 4 pm and hear the results of the bone marrow biopsy (important---pray it is clear), the MIBG scan from last week, and the renal scan from tomorrow morning.
Erik should be able to start chemo on Wednesday (if platelets are high enough), which is 5 days early on the three week schedule. He'll have chemo until Saturday or Sunday, depending on which chemo he gets. The bone marrow results will determine what happens next.
Erik and I will try to get in the Ronald McDonald House tomorrow night so Brandi can go home and work on Wednesday. Hope she makes more than the gas costs to drive back and forth! She'll come back on Wednesday night, and I'll go home to get ready to go to Chicago. We haven't figured out who is going, but I sure wish Erik and Brandi could go.
So hopefully I'll be able to post the results tomorrow night at RMcD house. They said they are willing to make an exception for Erik to stay there since he was diagnosed only two months after his 20th birthday, and it is a pediatric tumor he was treated for years ago. This will hopefully give us the option to stay at RMcD if Erik goes to U of Minn for the stem cell transplant.
LOOK HOW FULL THE GLASS IS!
We thought Erik would be gone all summer in Mexico, and we would miss him so much, but now we have him here.
Brandi had a busy summer planned working, and we knew we'd barely see her, and now we are relishing and cultivating a rich relationship with her.
Erik and Brandi have a great perspective on college and the artificial stresses contained therein.
Instead of typical marriage counseling lessons to prepare for future possibilities, they are living it.
There are no superficial prayers at our house.
There are a LOT of prayers at our house.
Little irritations between kids have vanished.
Instead of tennis lessons, Lesa has learned something important.
Karl has grown tremendously in handling increased responsibilities, cheerfully.
We really like each other.
We laugh everyday.
God is so good!
Erik gets to sleep in--- the first time in weeks it seems. Brandi went to clean cabins, and everyone else is resting on this beginning of a very hot day.
Good Things:
We had such a good time at the hospital on Thursday. I brought all four kids---Erik is still my kid---and Brandi had her VERY first day off of hospital stuff so she could get in a day of cleaning at the resort near her house. She has spent 39 days out of the past 62 at the hospital or clinic!
Aron behaved so nicely for 2.5 hours waiting for Erik’s MIBG scan to finish. The nuclear med computer was down so they got terribly backed up. Lesa played quietly with a wooden maze, Karl read his book, and Aron read a book to the entire waiting room, which was packed. Erik came back and Aron finished the book for Erik, and the whole waiting room responded with big smiles, and oohs and ahhs. Those of you who KNOW how much energy Aron has will be amazed with me how well that went! A nice Grandma type took a liking to Lesa and told her what a very nice patient girl she was. Then we went to the cancer center to get Erik’s counts, and THAT took three times as long as it should have. But Aron struck up a deep and meaningful conversation with a nice grandpa type (retired farmer), and Erik joined in as well. When Erik finally got his blood drawn, Lesa and Aron accompanied him to see how it works coming out of his Hickman. Aron nervously announced “I already had my draw” and stood as far away from the nurse as he could manage.
Karl also keeps us entertained for extended periods of time because he has memorized the words to many funny songs and poems. I like his rendition of some better than the original—Al Yankovich has a couple Star Wars songs, and a computer song that is really funny. Lesa can spin her braids, propeller-fashion, and whap two brothers at once. Also very entertaining---another talented child of mine.
Erik may skate through this round with no platelet transfusions. He dipped to 23 on Thursday and 22 on Friday, with signs that they are on the way back up. That is very good news. His white cell count didn't drop all that low (1.3) and aside from the strange dip in his hemoglobin (7.5), this new chemo (topo/cyclo) is a breeze. He even GAINED two pounds!
We have so much to be thankful for! Someone must be praying for increased business for Paul—he got several calls last week, praise the Lord! This is wonderful because June was pitiful.
Erik is in good spirits and really appreciates NOT having to go to the hospital or clinic for anything for two whole days. We really enjoy the time together as a family, and Brandi just makes everything even better! God has blessed us abundantly beyond all we ask or think, and has given us such joy in each day.
Your prayers, calls, posts, emails, dinners, and dollars tucked in envelopes are so incredibly kind. We are so blessed to have people who love us and are willing to go to battle in prayer with us for physical and spiritual victory, and to encourage us along the way. God reigns!
“Hear my cry, O God;
Attend to my prayer.
From the end of the earth I will cry to You,
When my heart is overwhelmed;
Lead me to the rock that is higher than I.”
Psalm 61:1-2
Yesterday Erik and Brandi went for the injection for the MIBG scan, and found out at noon that his hemoglobin was really low (7.5) so he had to stay for blood. Erik was finally discharged at 11:30 pm. For some reason blood TAKES FOREVER! So they got home around 1 am and had to get up at 6 am to get back there by 8:30 am for the scan this morning. I went with them since we had an appointment with Dr. Kobrinsky. Erik had his scan which took about an hour, then we shopped for a bit while waiting for our 1 pm appointment.
Dr. Kobrinsky caught us up to date, and even though I always leave with more questions than I started with, we have a rough idea of what is coming up.
Recap:
Last week (Mon-Fri) was new chemo topo/cyclo, and back for neulasta on Saturday.
This week (Tues-Fri) he has MIBG scan.
Next week (Mon-Tues) he has another bone marrow aspiration and biopsy and a renal scan and see Dr K for results of scans and biopsy.
Next week (Wed-Sun) another round of topo/cyclo if Erik's counts are up AND biopsy looks promising (more reduction in tumor). This means Brandi and Erik may not be able to go to the NB conference in Chicago, but I may still try.
Did you notice there is no break at all in the above schedule? We sure did. I am so glad we escaped for some camping last week, and Erik got to see fireworks (even though his red cell count was so low he had a terrible headache and felt extremely tired.)
Next week is supposed to be Erik's "week off" from chemo and transfusions--although that hasn't happened yet, in the three week cycle he has still been back for blood and antibiotics each time anyway. So after two weeks of being in everyday to Fargo, he will go back on Monday for a renal scan to see if the radiated kidney from previous treatment really does not function, and another bone marrow aspiration and biopsy. Dr. K is optimistic his counts will come up rapidly from this new chemo, so he can start the next round almost a week early (I am doubtful about this, but what do I know).
The big issue is, will the biopsy be completely clear? I have asked many questions about quantitative analysis on the bone marrow, and have seen it is a big topic recently in the medical literature because of the problem of treating “minimum residual disease” in neuroblastoma, but haven’t gotten any answers in how the analysis is actually done here. If the next biopsy is clear, Erik will start the next topo/cyclo course and be sent to U of Minn for stem cell harvest right after the course is finished. The harvest takes several days of injections of stimulating factors that mobilize the stem cells to leave the bone marrow and go in the peripheral blood, then the stem cells are filtered out of his blood and then the blood is returned to him, similar to platelet donation, and takes about 5 hours. The stem cells are purged of tumor and frozen to return to him after the "big" chemo for transplant. The good news is he has a double lumen hickman so he doesn’t need two IVs for this procedure.
Erik would then be ready for the transplant work up, and he would be in Minneapolis for the next two months or so, depending on how things go.
THEN we would look into some additional drugs to prevent relapse (unfortunately a very high risk), and that will take some scouting out. The good news is, some are just oral drugs, your hair grows, and life returns to normal.
The flip side: if the biopsy next Monday shows no significant reduction in tumor, we have to switch gears immediately and consider the MIBG radiation in Michigan or something else (antibody/immunotherapy in Wisconsin or NYC) to hopefully attain perfect remission, then transplant, if his stem cells aren’t damaged by the additional therapy. At that point we may be forced to consider allogeneic transplant using donor marrow.
The reason for this is that the more chemo Erik gets, the more chemo-resistant the remaining tumor becomes, and a transplant will not work if the tumor has seen much chemo.
Now you know how to pray! PERFECTLY CLEAR BIOPSY NEXT MONDAY (we’ll know on Tuesday…)
Side note:
In our meeting today with Dr. Kobrinsky, I had three piles of abstracts on my lap, a folder of reports, and a notebook with questions to ask. After a couple questions he really had no time or interest to go into, Dr. K made a crack about my “coping mechanism” of trying to understand everything, and this is how I am dealing with this “stressful situation” because this is all out of my control. I of course was very polite and didn’t make any wise cracks back. But now, only slightly irritated, I cannot help but think “How would he handle this is if it were his son? Would he leave any stones unturned?”
After our meeting, Erik found an article in the waiting room about gambling, and it had a self-quiz to determine how bad one’s addiction to gambling is. So he teased me with the quiz, reworded:
“Mom, do find you are frequently lying to your family about your researching habit?”
“Have you borrowed money to support your researching habit?”
“Have you committed any illegal acts to pay for your researching habit?”
We all had a good laugh, and got some funny looks from others in the waiting room.
Today everyone is going to the small town parade, picnic, and fireworks.
Erik still has a nasty cough, but feels pretty good and energetic. I hope he will have decent counts this week so he won't need any transfusions. Tomorrow he is injected with MIBG - 131I for the MIBG scan that will take place on Wed, Thurs, and Fri, all in Fargo for a total of 12 hours of driving, UGH. Brandi and I may alternate. It would be good for her to have time with her family.
The only mishap: after Erik finished chemo on Friday Brandi and Erik drove back home and Erik woke up Saturday with terrific abdominal pain, and Brandi's Dad (Paul) took Erik back to Fargo for the neulasta shot. While he was there he was in such pain they gave him a shot of morphine. I wasn't very happy with that (different crew than the weekday crew that gives chemo) because they just covered up the symptoms without determining the cause of the pain. Thankfully this morning he feels pretty good, so hopefully it resolved, whatever it was!
We had a wonderful camping trip with several dear homeschool families. One family came just for the day from Warroad near the Canadian border (quite famous in Minnesota) who have 16 beautiful children---they brought 10 of them with them on Sunday. The mom, Miriam, speaks at homeschool conferences, and I had been to one of her presentations. Incredible family! They were recently on the news and enjoyed some extremely positive press about their family, and Good Morning America even called and requested an interview with them, as well as other TV shows. They are wisely discerning in who they consent to work with! What a blessing to meet them! Their website is
http://www.buildingthefamily.com/whoisheppner/
It was nice to enjoy some sunshine and have heart to heart relaxing time with other moms!
Dr. K called us right before he left for Germany about the bone marrow biopsy, which we thought we would not know results until late next week when he gets back...bone marrow is now less than FIVE PERCENT neuroblastoma! After the first chemo it dropped from 100 percent to 40 percent, and after the second chemo it dropped to under 5 percent! This is really an exceptional initial response to chemo. Erik started the topotecan (new) and cyclophosphamide (old) on Monday and will have this combo all week, and neulasta shot on Saturday. Then on Monday, the 4th of July he has to go to local hospital to get blood drawn (hopefully his counts will NOT drop so much he needs so many transfusions) and then on Tuesday he goes back to Fargo for injection for the MIBG scan which takes four days! He'll have to go to Fargo everyday or find a place to stay again, which is a pain.
So far he is feeling GREAT with this new chemo, and is not very sick or sleepy. We are thrilled!
So what is next? After the MIBG scan, we'll have to talk to Dr. K about options. The trick with neuroblastoma is that it is NOT uncommon to have a nice response initially (which IS much better than no response!!!), go into remission, go to transplant, and then WHAM relapse with a vengence 6 months later. So I am maintaining an aggressive attitude toward uncovering any treament that may take care of the last chemo-resistant cells that repopulate and cause vicious relapse that cannot be treated.
I am very interested in uncovering as many ideas as possible before going to the neuroblastoma conference in Chicago the week after next (July 14-17) since we will have opportunity to talk to a dozen doctors slated to give presentations.
Then we will hurry back for a week of the same chemo July 18, including bone marrow biopsy again. I am so glad the new drug (propophol, an amnesiac) works so much better than the way they did bone marrow biopsies years ago. It was VERY traumatic and painful. Erik does extremely well with these and does not even take tylenol afterward for pain, with both sides of his hip bones aspirated and bone removed for biopsies!
The other thing I am hoping Dr K moves rapidly on is talking to Dr. Tolar about stem cell collection. They do not agree at this point on the timing for autologous (self) transplant. Dr. Tolar agrees that transplant is unlikely to work alone, and relapse is very likely. Either way, the stem cell collection has to be done while Erik's stem cells are in good shape, before he gets too much chemo. Dr. K wants every trace of neuroblastoma gone first, which may take a while to get under 1 cell in 100,000!
The other excellent news is I was very concerned about his echocardiogram that had revealed lower ejection fraction after the first dose of doxorubicin (dropped from 60 to 48 percent) which would eliminate Erik from some clinical trials. After his second dose, the echo showed 60 percent ejection fraction! That is God's merciful doing, it never gets BETTER after a drug known to damage the heart!
I also mailed off the application to the county for medical assistance, but they said we would not know anything for three months! Oh well, at least it is done.
There is so much I could write, but I have to pack for camping this weekend.
Thank you so much for checking up on us! Have a wonderful weekend and happy and fun FOURTH!
The plan is they will stay at John's until Saturday, because Erik gets chemo all day everyday until Friday, then goes back on Saturday to get the neulasta shot, and then they can come home and recover.
Meanwhile Dr. Kobrinsky leaves tomorrow for Germany to present a paper at a conference, so we will not know about the bone marrow biopsy until late next week. Hopefully today we will hear what the results of tests done at U of Minnesota were, as well as echo from yesterday.
Amazingly, our insurance already approved the MIBG scan (never done at Roger Maris before) and I am waiting to hear if the first stem cell collection can happen before the next chemo. These two items are necessary before we can move forward with 131-I MIBG radiation at U of Michigan. If the radiation goes well and Erik goes into a decent remission, he may be eligible for the immunotherapy at U of Wisconsin I mentioned yesterday (Phase II ANBL0322 hu14.18-IL2). The idea is this will help his immune system get rid of any rogue cells remaining. Neuroblastoma is notorious for relapse AFTER a nice response to chemo/radiation, because of "minimal residual disease" and that is the focus of much research to lower the extremely high relapse rate even after bone marrow transplants (70 percent or more).
There is an amazing resource to help me understand these new therapies, and the disease itself, pointed out through the neuroblastoma parent email ring. It is 2005 ASCO Annual Meeting (American Society of Clinical Oncology) web virtual meeting presentations, complete with slides and audio. It is incredible! There are excellent presentations by the big wigs in the world of neuroblastoma, and immensely informative. I can’t believe we did this 14 years ago without the internet!
So the next frontier is the world of social services, and helping Brandi and Erik decipher the applications for medical assistance and other programs they may be eligible for once they get married. This is more challenging to me than taking in hours of medical information! I am going to attempt to make some headway in this department today.
The other good news we received is that Erik and Brandi and I will hopefully be able to attend the annual neuroblastoma conference in Chicago, perfectly timed before the next chemo July 14-17. It is funded by Children’s Neuroblastoma Cancer Foundation and a couple other entities. The conference itself is free, complete with complimentary rooms! There are 12 doctors scheduled to speak, and one of them, Dr. Paul Sondel, is the principal investigator of the immunotherapy trial in Madison, Wisconsin. We are looking forward to the conference, and I will get to meet some of the other parents who have been generously sharing their combined experience and resources through the email listserv.
That’s probably enough for today! Thank you so much for signing the guest book, we LOVE reading your posts, and Erik is visibly lifted when he reads your encouraging words!!! Thank you for praying—we can see the results hour by hour. And thank you for checking in with us! I am so encouraged to know you care and that this journal serves as more than just an opportunity to “talk” to myself!
“Finally, my brethren, be strong in the Lord, and in the power of His might. Put on the whole armor of God, that you may be able to stand against the wiles of the devil. For we do not wrestle against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this age, against spiritual hosts of wickedness in the heavenly places. Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand.” Eph 6:10-13
Our visit with Dr. Jakub Tolar at U of Minnesota was SUCH an answer to prayer. He was thoroughly prepared for us, having read an inch-thick stack on Erik before we saw him.
I will try to keep from going into too much detail. We spoke with him an hour, and he outlined the most logical approach, with all the pros and cons of treatment options, which is what I was truly hoping for and needed to hear an "expert" opinion on.
He said we have six options:
1. Do nothing
2. Non-toxic accutane or thalidomide (possibly slows cancer)
3. more chemo
4. radionucleotide (targeted radiation)
5. immunotherapy (IL-2 or 3F8)
6. allogeneic bone marrow transplant
He thinks that more chemo is not a good idea, too much cumulative toxicity and guarantee of developing chemo-resistant cancer. He also does not think a transplant is likely to work, because it is more chemo, and generally the 2nd transplant is not successful. He told us to contact Dr. Paul Sondel at U of Wisconsin to check into immunotherapy, and I have already heard back from him this morning (even though he is on vacation!) He said Erik may be a good candidate for IL-2 clinical trial (Phase 2) and will begin in August. It all depends on his echocardiogram, which is being done again tomorrow. Dr. Tolar also recommended we check into the targeted radiation (using antibodies) at U of Michigan, so we will do that also.
Meanwhile, he ordered blood tests and urine tests that were not done at diagnosis, and an MIBG scan will hopefully be done in a couple weeks.
Erik will have bone marrow biopsy tomorrow, echocardiogram, and start new chemo topotecan/cyclophosphamide as outpatient. Brandi and Erik are staying at the same house she was sitting while the owners climbed Mt. Everest. No kidding. Hope that goes well, Brandi is concerned about imposing.
I am driving to Fargo at 6 am to meet them at the clinic for the tests and to get more info on upcoming plan. This requires a lot of logistics, to figure out when he can be where to consider other therapies, all the while keeping the chemo coming so the cancer does not gain ground.
Please pray for good results on the echo. If his ejection fraction is below 50 percent, he will not be eligible for the immunotherapy trial in August at U of Wisconsin.
Thanks for your love and concern for us. It means so much to us that you check on us and pray! Please sign the guest book too!
Erik relaxed, but no swimming for him this summer because of the hickman in his chest. He loves scaring me with back flips off the dock...maybe next summer.
After Erik's counts at the clinic in Park Rapids, we'll leave for the cities. I hope it won't be too hot for the zoo tomorrow afternoon. We'll stay at the reserve base (cheap dorm style rooms) and while Paul takes the kids to Mall of America Friday morning, Brandi, Erik, and I will go to see U of M transplant doctor Jakub Tolar. He already requested the tumor histology report from Dana Farber from 14 years ago, and wants the slides from the diagnosis last month. Besides the MD, he has a PhD in Molecular, Cellular, Developmental Biology and Genetics. I for one am glad he is interested in the characteristics of Erik's tumor.
We will be back home Saturday with a full report!
Please pray for clear guidance, and wisdom for Dr. Tolar.
Erik is scheduled for another bone marrow biopsy next Monday (7 am in Fargo...UGH), and more chemo. Please pray that the insurance will approve the topo/cyclo, and that his platelets will be high enough by Monday. IF he gets this new chemo, it is less toxic and easier to handle and is given five consecutive days OUTpatient! He has never had outpatient chemo, a new concept. We'll have to find somewhere to stay so we don't have to drive 3 hrs round trip every day.
My dear friend Ann in New Hampshire sent me the neatest gift...a pin with a tiny MUSTARD SEED encapsulated in it! It is a beautiful reminder of Jesus' words: "If you have faith as a mustard seed, you will say to this mountain, 'Move from here to there,' and it will move; and nothing will be impossible for you." Matt 17:20 AMEN!
She points out that some people depend on luck (and reminded me that the rabbit's foot didn't work for the rabbit!) but faith is infinitely better.
"My bretheren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience." James 1:2-3
Happy Summer! Praise God!
Brandi and Erik are shopping and having some fun running around Fargo after his discharge this afternoon. He is enjoying NORMAL white cell counts and needs the platelets to come up a bit. The good news is, since they were 19 yesterday, and a whopping 20 today, he didn't need platelets after all, with expectations they are now on the rise.
On the home front, talked to bmt at U of M, Roger Maris/MeritCare about records, and insurance people about where we are at for Friday's visit to U of M to see Dr. Jakub Tolar. Still don't know a whole lot, but Dr. Tolar does have some records to look at before the visit. No word on whether we will do MIBG scan, and no idea about when stem cell collection will take place, if at all. I found a very helpful nurse who knows just about EVERYTHING about transplant, so I am pleased to have her number for future reference!
I am still praying that everyone involved will confirm using Erik's own stem cells, rather than donor, if that is where God is leading.
Erik is scheduled for another bone marrow biopsy next Monday, and third round of chemo. Please pray that the topo/cyclo will be approved, so he won't have to get cisplatin, which is what fried his hearing, in addition to antibiotics he had during his bone marrow transplant 13 years ago.
Thank you for keeping us all in your prayers. This is such a long haul. I am especially impressed with the young people (Erik and Brandi's age) who have expressed their love and concern for what Erik is going through. It is a heavy thing, and it is much easier to avoid any contact with them than to have the guts to call or visit and give Erik and Brandi hugs! Hugs are good!
Please pray for the benefit planners. They have a LOT of other things they could be doing with their summer! What a sacrifice for us and what a labor of love.
Praise God!
He is getting IV antibiotics round the clock (he is on three antibiotics) even though he no longer has a fever and his white cell count jumped to 6 today! He got blood and platelets again, and will likely get platelets agin tomorrow. He might be released tomorrow.
Dr. K never came in to see Erik so Brandi could ask him questions.
The U of Minnesota bone marrow transplant coordinator called today to schedule a consult for this Friday, since Erik is due for chemo again next week (seems he is not getting much of a break here from the hospital). So we will go on Thursday after his blood work is done in Park Rapids, and stay the night since the appointment is at 8 am. Hopefully all the records will be transferred in time, or it could end up being a wasted trip!
Today Paul and I celebrate 26 years of marriage, and Angela Ahrendt brought us a beautiful dinner and cake! The food has been really wonderful. I am getting awfully spoiled, and may forget how to cook altogether!
Pray for rest for Brandi. She is such a trooper. I still feel so guilty leaving her there to deal with everything, even though she is 200 percent capable of handling it all.
Pray for God to give us clear guidance as we check out U of M.
No one guessed Liszt "Hungarian Rhapsody No 2"? Erik will be disappointed!
Last night was a bummer.
Erik and Brandi and Aron and Lesa went to Brandi's house for turkey and swimming. They all had a great time until Brandi called me at 9:30 pm saying she thought Erik had a fever. She met us with Erik and the kids at the emergency room in Park Rapids at 10:15 pm and Paul took the kids home. We sat in the emergency room until 2:30 am while Erik got vancomycin for the fever...they do not know where the fever is originating (took cultures of blood and urine, nothing yet), but they think it could be his Hickman, so I am praying they do not have to remove it and start over with another one!
The ER doc called the oncologist at Meritcare in Fargo and the onc wanted Erik transferred to Fargo. One of them decided we could drive him. Wasn't that nice...leave here at 3 am for almost 2 hour drive...GRRR.
Brandi said she could stay awake, and even though I felt terribly guilty letting her drive, she took him to Fargo herself, while I prayed and felt guilty (no sleeping!) mostly because Aron was hysterical last night that I was going to the ER with Erik and he didn't want mom to disappear for another three or four days. I am exhausted this morning...can't believe Brandi is able to do this marathon without sleep. She is AMAZING!!!!!!!!!!!!
This morning the fever is gone, he is on another antibiotic, and got platelets and will get blood this afternoon. His platelets were 3, hemoglobin was 8.3, and white cells decent at 1.8--he didn't get much of a bump from the platelets and blood on Thursday. Eleven transfusions so far. I am so thankful he hasn't had problems bleeding so far from the incredibly low platelets he has had for a significant period of time (on and off). You can bleed internally and not know it, it can be life-threatning.
Pray that Brandi will get questions answered, that Erik will get to come home tonight or tomorrow, and that the infection is not in his line.
Give your Dad a hug!
For out-of-towners, this is a special night because it is such a small town community event...great time for socializing, games and food for the kids, and neat opportunity to catch up with folks. Many people expressed support for Erik, and we sure appreciate Dawn and Robin and Beth...Robin printed up beautiful flyers to pass out for Erik's benefit in August!
We need to plan to form a team for Erik next year! Any ideas?
I can never express enough thanks for the outpouring of love and concern for Erik. We just can't believe the effort Robin, Beth and Dawn are putting into the benefit, and all the wonderful meals that have been made for us! Even Erik only lost 3 pounds from this last round of chemo...unbelieveable! The rest of us, well, we're not losing, that's for sure!
Keep praying for clear direction. We should know something by next week about treament options. Meanwhile enjoy your Father's Day celebration! The next day, Monday Paul and I celebrate 26 years of marriage. Last year our 25th was ON Father's Day. Praise God for His goodness to us!
Erik will be Torch Bearer. He is feeling a little better, probably because he got two units of blood and one unit of platelets yesterday. He had counts done in Park Rapids at 9 am, drove to Fargo, got admitted to 7 main, then it took almost 12 hours to get the blood products. We were discharged at midnight, and got home at 1:30 am. I shouldn't complain though. Better than the basement in the day unit with no windows. We were in the isolation room (because his white cells were 0.04, all time low) on the south side, with the nice view.
The disappointing part was not seeing hair nor hide of Dr. K. So we still don't know anything about appointment at U of Minnesota for transplant consultation. We also didn't get any of our questions about clinical trials answered.
Erik emailed his professors about the two finals he still has to take. I hope that goes okay. It would be nice to get some of that off his mind.
Have a wonderful weekend. I think summer is really here. It is beautiful out today!
I have a stack of clinical trials to go over with Dr. Kobrinsky tomorrow while Erik is getting platelets, so I hope Dr. K has time to talk! It is strange, we don't have real appointments, he just pops his head in the room in passing.
Dr. Cohn from Chicago called today and insisted that Erik should have stem cells collected right away, as well as MIBG scan to see if the tutmor is MIBG-avid. This needs to be done before next chemo. I need to find out if these things will be approved with Tricare soon, because if Dr. K has to appeal denials, that all takes time we don't have...especially if it means delaying chemo. He is already appealing the denial for Topo/cylco.
I appreciate so much the love and attention you have showered on us. This would be a wretched thing to do alone.
Be sure to read the Enterprise article!
http://www.parkrapidsenterprise.com/
Blessings!
I finally talked to two people about our insurance. One was really rude and left me more confused than I was at the beginning. But the other (a nurse who approves specific clinical trials) was very helpful. She went through the NCI trials with me while I was on the NCI website, and explained which trials Erik was eligible for that Tricare would pay for.
I have printed out 8 phase 2 clinical trials and Brandi and I will be looking over them carefully for all the pros and cons to see what would be wisest to enter first, so as to not lose eligibility for a future trial. This is tricky business. Then we can discuss these with Dr. Kobrinsky.
Tricare will not pay for allogeneic transplant, so that may be another confirmation that it is not the way to go. They also will not pay for autologous unless it is part of a phase 2 clinical trial. So I do not think we will be going to U of Minnesota after all.
The trials are located as follows (all are different trials):
1 in Boston
2 in Fargo
1 in Wisconsin
4 in New York
The trials are paid for but no transportation or cost of living expenses. That will be a challenge if Erik ends up in New York, where the more promising trials are located.
If Erik stays out of the hospital he will be a torch bearer at the Relay for Life on Friday night. The article about him should be in the paper tomorrow.
Brandi is PERFECT. We love her so much. She is a dream come true! She is sunny skies and summer flowers! She is so cheerful and so capable...I can't imagine doing this without her.
My 15-year old Karl left and a sheep dog came back in his place. He thought I wouldn't notice. But I fixed everything. I cut his hair. Welcome back handsome Karl!
Lesa and Aron are so happy when we are all home. I am hoping I can spend more time with them now that we sort of have the hang of the treatment routine, for now anyawy!
Paul is doing well, and getting a few computer calls. Be sure to tell all your friends to call Paul for computer help!
Blessings on you and your family! Rejoice in God's goodness. The joy of the Lord is your strength!
Please keep signing the guest book!
This morning's blood counts in Park Rapids: no trip to Fargo today for platelets. THANKS GOD, we're kinda tired. We had a beautiful day at the park yesterday, and didn't get everyone to bed until pretty late. Erik and Brandi spent a few minutes at the park and visited her family.
White cell count is back in the basement at 0.1, hemoglobin is a long way from transfusion level at 9.8, and platelets at 55. We'll be back in Fargo Thursday for platelets for sure. Pray that Erik does not have more problems with reactions to the platelets. He will be in trouble if he does. He was heavily premedicated and had reaction last time anyway, so we'll be watching that closely. I need to find out about related match for donating platelets. Paul and I may be able to donate. Also pray for continued protection from fever/infection!
I am waiting to hear back about the insurance issues. Dr. K. said he originally wanted to start Erik on topotecan/cyclophosfamide (affectionately referred to as "topless cyclone" by the unique class of humans known as neuroblastoma parents). It is MORE effective and LESS toxic than the threesome Erik received. Tricare denied the topotecan. This is a good method for making rattled parents crazy. Pray for me to be nice to the innocent Tricare phone person when they do call me back...
Still also waiting to hear about the bone marrow transplant consultation at U of Minnesota. This is also held up by Tricare.
Meanwhile we continue to refuse to play tug of war with our lives with God. Our lives are surrendered to Him. He will continue to show HIMSELF mighty through all this (even minor tiffs with Tricare) and He continues to show us each day what He wants from us. Praise God! His incredible spiritual riches are ours for the asking: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and even SELF-CONTROL!
"I, therefore, the prisoner of the Lord, beseech you to walk worthy of the calling with which you were called, with all lowliness and gentleness, with longsuffering, bearing with one another in love, endeavoring to keep the unity of the Spirit in the bond of peace." Eph 4:1-2
In the past four weeks my first-born son has been transformed from the somewhat (overlooking his calculus woes) carefree status of dorm-living-college-sophomore planning a summer adventure building homes for dump-dwellers in Mexico (and dreaming of a wedding in November to his true love) into…
…a bald, anemic, bruised, immune-suppressed, nauseated 20 year old with absolutely no plans for the near future except fighting a particularly deadly cancer called neuroblastoma.
Oh yea, I forgot to mention he’s already been there, done that. Thirteen and a half years ago. Never mind. Where does the humbling come in? I will tell you and insist that you read on and see why I am so humbled.
If you have three hours, I recommend reading everything on Spencer Dolling's site...you will never be the same. This is the story of the sweetest, bravest boy with the most amazing family. He has already had insanely heavy chemo, surgery, stem cell transplant, more chemo, radiation, experimental drugs, allogeneic bone marrow transplant from his little brother… and he is STILL fighting this horrific cancer. No one can tell it like his Dad, Steve.
http://www.caringbridge.org/canada/spencer/
Or check out Ellen Hanson’s story. Happy family with mom, dad, teen daughter, little boy, and delightful arrival of triplets (two girls, one boy named Sean). But Daddy gets sick…lung cancer. Then one year old triplet Sean is diagnosed with neuroblastoma. Eight months later Dad dies. Three months later Grandpa (was father and immense help to Ellen) dies of cancer.
Now you have the setting for Ellen’s Thanksgiving message, written a little more than a year after her baby was diagnosed with cancer…look in journal history dated November 22, 2004 at Sean’s website: http://www.caringbridge.org/ma/seanhanson
You’ll be humbled too.
One more. (Although I could go on like this all day and all night...) Imagine a little girl who never remembered life without cancer. Her name is Alex. When she was just four years old, Alex asked if she could have a lemonade sale to raise money for "her hospital". Her mother told her that it might be difficult to raise money fifty cents at a time; Alex's response was "I don't care, I will do it anyway”. In July of 2000, she made good on that promise and raised over $2,000 for Connecticut Children's Medical Center. Years of fighting without success, her family moved from Connecticut to Philadelphia so they could get the latest and hopefully effective treatment for neuroblastoma. Alex continued to fight, and sell lemonade. She died at 8 years old after 7 years of fighting cancer, Aug 2004. Her lemonade stands have raised over 1.5 million dollars for cancer research. This week they have a goal of $5 million dollars.
Lemonade anyone?
See her story at http://www.alexslemonade.com/index.php
See what I mean?
Update on Erik:
He is doing pretty well, watching the fluid intake and hoping he won’t have to go in for IV fluids. I can’t figure out how he can have a sense of humor when he is throwing up. I’m really not very funny when I have the flu.
He was lying on the couch with his eyes closed yesterday afternoon, and he said without opening his eyes, clutching barf bucket to chest:
“I have a plan.
First I am going to throw up.
Then I am going to take my pills.
Then I am going to take a nap.”
What a life.
We sure enjoyed the meal sent all the way from New Hampshire!
Emily was Erik’s transplant buddy almost 14 years ago…since they were in isolation, they never actually saw each other at that time. Emily was well-known for her fixation on Barney. She insisted on having Barney videos running continuously for over a month. I had the pleasure of getting to know her parents Bob and Ann very well…cool people, and no documented damage from the overdose of Barney that I know of. They sent us a GUMMI MEAL…complete with pizza, French fries, burger, and root beer!
PHOTO above is Erik with Gummi pizza, upon arrival home from chemo Thursday night! Check out the other new photos!
We are thankful for vast amounts of praying, prayer group meeting weekly for Erik, benefit planners, amazing meals, calls, cards, and FLOWERS IN MY FRONT YARD!!!!
TREATMENT OPTIONS: the saga continues…
Dr. Diller and Dr. Kobrinsky never connected on Thursday as expected. I emailed all recommended specialists (PA, CA, MI, NY, IL) on neuroblastoma, and heard back from several. Dr. Matthay from UCSF called me yesterday, and contacted Dr. K. She was primarily interested in proof that Erik does indeed have neuroblastoma. She wants a sample of bone marrow sent to Philadeplphia for research to see if biological characteristics change with such late relapse. She wants to keep posted on his progress…journal article forthcoming. I also talked to bone marrow transplant coordinator at U of Minnesota and found out some interesting things, mostly that our insurance (Tricare) is everyone’s worst nightmare. Audible groans from everyone involved. When the recruiter tells you lifetime medical care for military service…put it this way—you better stay healthy. They don’t approve any transplant for relapse. Oy vey, TONS more researching to do. I started looking at clinical trials, since our insurance will pay for phase II and phase III trails. I don’t know how we could get into phase I when they don’t pay for it.
Dr. K called yesterday afternoon after he heard from Dr. Matthay and took the time to explain his rationale a little better. I was afraid he was irritated about my contact with the other investigators, but he didn’t seem to be. He actually expressed his regrets that we are dealing with this again, and acknowledged the stress we have in trying to understand our options…it is hard.
Focus! Be thankful! Laugh! Praise God!
Counts and electrolytes look good so far. Brandi is such a trooper. She has only left the room for a few minutes since admission on Monday. I went for a walk on Tuesday, that was nice.
I have also been spending a tremendous amount of time researching all the options. Yes I am hogging the computer on 7 main! Looks like we will be going to U of Minnesota for bone marrow transplant consult in a couple weeks. Dr. Kushner from Sloan Kettering (NYC) AND Dr. Diller from Dana Farber (Boston) both emailed me right away with answers to my questions about allogenic transplant--both said they would NOT recommend allogenic transplant (too risky). I am glad to hear it. Dr. Diller just got Erik's records from the warehouse and will be calling Dr. Kobrinsky today. She also said to call her directly, so I will be doing that.
So I am sitting on the edge of my seat waiting for more answers.
A very beloved nurse who has worked here for 25 years was hit by a car yesterday as she was walking to work. Please pray for her family and all the nurses here who loved her...they are broken hearted.
Blessings to you all who care for Erik...enjoy a beautiful June day, and squeeze everyone you love!
WEDNESDAY morning mini-update...the bone biopsy is not clear...still tumor present, which is to be expected. The "quick" look at the aspirate (liquid) bone marrow was clear, but the solid bone has tumor present, we found out this morning. Erik WILL probably need more chemo here before considering transplant. I will be cramming to figure out all options...keep praying...
******************************
NOW WE NEED DOUBLE PRAYERS...
Brandi made a profound statement after Dr. K. came into see us this afternoon. She said, if Erik gets really good news (LIKE CLEAR BONE MARROW...final result isn't in yet though), people will stop praying. I thought about how often I stop praying for a person when the news is good.
PLEASE don't stop praying for Erik. We really need double the prayers now. Dr. K said he is referring us to University of Minnesota in two weeks to consult with the bone marrow transplant doctor. They will likely run every test all over again, as well as HLA blood typing on all of us again, since there is still a possibility of using sibling stem cells. We have a tremendous amount to learn and decide in a short time period. PLEASE PRAY FOR CLEAR GUIDANCE! This chemo could be his last one here...he could be at U of M in transplant within a month.
All of this is genuinely good news. I cannot overstate how shocked I am that his marrow is relatively clear of tumor when it took 9 rounds of chemo to clear it 14 years ago...The awful memory of how long Erik went through chemo after chemo after chemo and how he just got sicker and sicker each time. We never even heard "transplant" until 7 months after his orginal diagnosis. Now it has been four weeks since this all started. This is mind boggling for me.
Since we have options, the choices will be tough to sort through, because there are grave consequences to consider for each choice. But we are VERY thankful that such rapid progress has been made at this point. Please pray for wisdom! Poor Erik is overwhelmed with the information, being a bit like his Dad who also isn't into absorbing vast quantities of medical jargon. Pray that he is confident that the answers are from God about what to do next.
Meanwhile he is doing okay with nausea, on and off. He ate a little. He is really sleepy from all the benadryl, and hasn't really been out of bed for the past 24 hours. He should get the stitches out of the Hickman (finally) tomorrow. Two more days of chemo...if all goes well he'll be home Thursday night and go to Park Rapids clinic for neulasta shot on Friday afternoon.
Keep an eye out for an article about him in the Park Rapids Enterprise before the Relay for Life!
We can never thank you enough for your intense prayers and concern for us. Miracles abound! Praise God!
DR. KOBRINSKY JUST TOLD US THE PRELIMINARY RESULT ON THE BONE MARROW BIOPSY IS THAT THERE IS NO VISIBLE SIGN OF ANY CANCER...!!!!!!
Why don't I pray regularly for miracles?
This is a preliminary look at the bone marrow. Tomorrow a more detailed result will be ready. It is likely there still is tumor present, but the big deal is going from nearly 100 percent packed tumor and virtually no normal cells, to virtually NO tumor and all normal cells after only ONE ROUND OF CHEMO. The same team that did the last bone marrow aspiration said the bone marrow was so crowded last time it was under pressure and SQUIRTED out when they pierced the bone.
Isn't that great news! Certainly more than I prayed for...I hoped for some reduction, any reduction in tumor.
For comparison purposes, when he was diagnosed the first time at 6 years old, the marrow was also packed with tumor. It took 7 months (9 rounds of very intensive chemo) to clear his bone marrow, and then he was a candidate for bone marrow transplant, using his own marrow (autologous) and obviously we had a good 13 years since then. The other amazing thing is that Erik has had all three of these chemos before...so nothing new this time! This cancer is notoriously hard to cure once it is widespread. Relapse generally is much worse, because the neuroblastoma has demonstrated resistance to the various chemos.
NOW if all goes well and Erik's bone marrow is really clean soon, he will be strongly encouraged to have another bone marrow transplant. This time Dr. Kobrinsky wants Erik to have allogenic transplant (using sibling marrow, and we won't know until late this week if Lesa or Aron match--Karl does not match). Sister to brother donor is more risky for GVHD. Dr. K. feels unrelated (MUD--matched unrelated donor)is too risky, and I agree. So now you know what to pray about this week. This is a very difficult decision. The research I have done so far looks like very few allogenic transplants are successful. GVHD causes most deaths (sooner or later). Some graft-versus host disease is good because it causes a graft-versus-tumor effect. If all goes perfectly, it is supposedly a shot at cure. BUT remember this is very risky procedure and long term effects from all this can be bad (like more cancer!)
Anyway, we are thankful for progress today. Pray that the chemo goes well. He is getting the exact same three chemo drugs as last time. If he has no problems, he'll be home Thursday night!
I'll keep you posted. THANKS PRAYER WARRIORS!
God is so good!
Until then, please pray!
We left home at 7 am on Tuesday, got to the clinic in Fargo at 8:30 am. Erik had blood drawn, Brandi checked out of her apartment, and Donna dropped off paper work at the Social Security administration office. We waited a couple hours for them to draw blood on all of us for HLA typing. This turned out to be much more traumatic for Aron than any of us expected. He was fully prepared that it would hurt a little bit, but he would need to hold still so it would go quickly. Well, he didn’t hold still, so they had to poke his other arm too. There was a sea of faces around him, and more tears than only his—as he was begging them not to poke him again--and a lady with bubbles who kept repeating to “blow the owies in the bubbles.” This was harder on Erik than anyone.
We finally hit the road at 11:30 am and got to Keystone at 9 pm. Karl drove for 2 out of the 9 hours in heavy rain, and I fell sound asleep! (I hope drivers with permits can have sleepers in the front seat. That is truly “resting in Jesus”!) We enjoyed Mt Rushmore, Presidential Wax Museum, Storybook Island, Dinosaur Park, and of course, Wall Drug on the way home. The woman who took our reservations for the motel arranged for us to have a free dinner at a fancy restaurant. It was really nice! Erik ate amazing quantities. He felt good, rested often, and we took it easy on the trail at Mt Rushmore. We looked at the Badlands from the distance---not enough time for the National Park. We arrived home last night at 1 am.
Erik had his counts checked this morning in Park Rapids and everything is up except platelets, which is common. They were at 27 on Tues, are now 43, and need to be 75 by Monday. We have to be at the clinic in Fargo at 7:30 am for blood work, and they will do another bone marrow aspiration to see if the chemo did anything. We’ll know early Monday if he will be admitted for chemo, and what kind of chemo. So, pray for strength, CLEAR bone marrow, and wisdom for treatment choices for Dr. Kobrinsky.
Thanks for praying, for all the great notes, and for lifting us up with your love and concern. It means so much to all of us!
Erik and Brandi are enjoying Brandi's family Memorial Day cookout, and then going to see the Star Wars movie tonight.
We are leaving at 6 am for Fargo, clinic, Brandi check out of her apt, Donna turn in paperwork, then OFF TO MT RUSHMORE!
We will stay two nights. This will be especially exciting since Brandi has never seen mountains or terrain other than Minnesota trees or prairie. We should be back LATE Thursday night...I am hoping somehow we can change the Friday clinic appointment so we don't have to get up and go back to Fargo Friday morning---that is when Dr. K wanted us to all have blood drawn for HLA type. We'll see what they say tomorrow. MORE ON FRIDAY!
(Monday morning post below)
Yessssss, we're home! Someone was praying! Dr. K came to see Erik on Sunday (both Sat and Sun were his days off) and said even though Erik's counts are still overall low---1.3, up from 0.6 the days before--- he could see signs of bone marrow recovery in the larger platelet cell volume, indicating they are "baby" platelets that Erik's bone marrow is making. Yipee! So after two units of blood which takes F-O-R-E-V-E-R, we left just after 8 pm and got home at 10 pm last night...which is getting to be a pattern. Check out the photo album. Erik was feeling so good in the hospital, we took LOTS of photos. He was quite the entertainment for the oncology floor this weekend.
Soooo, Brandi and I conspired all the way home. What do you do when you have one week before chemo, and clinic visits on Tuesday and Friday for counts? Sit around the house and do laundry? We think not. We are planning to leave from the clinic on Tuesday and have an adventure somewhere. Mount Rushmore? Chicago? That's my job today to plan.
Meanwhile we appreciate your prayers that Erik stays healthy and feeling great. We are scheduled now for clinic on Tuesday (tomorrow) so Erik can get his stitches out of the Hickman (his platelets were so low, they never touched it) and Brandi can check out of her apartment. On Friday the whole family is supposed to go be HLA typed (for possible bone marrow donation and blood products since he has had so many reactions to blood products...and he has needed seven transfusions so far from the first round of chemo). Pray for Aron and Lesa, this is heady stuff for them, and they aren't big on needles.
If his counts rise enough, he'll have the bone marrow aspiration on Monday and they will check right away for reduction in tumor. Dr. K said he would like to see less than 10 percent tumor remaining, and if so they'll continue on this protocol for recurrent neuroblastoma. He is optimistic that since it has been so long ago that Erik had chemo for his first diagnoisis in 1992, the tumor will hopefully not be resistant to chemo. Then he will continue for several rounds of various chemo (several months) until his bone marrow is clear and he will be eligible for another transplant, this time with someone else's bone marrow. This would take place somewhere else, as they don't do bone marrow transplants in Fargo. I have mentioned before that this prospect makes me very nervous, having seen the ravages of graft versus host disease. Stem cell and cord blood are other options, but GVHD remains a huge threat. Please pray about these difficult issues that lurk on the horizon.
Dr. Kobrinsky came in to see Erik on his day off, and answered more questions about treatment protocol. He said next time he'll give us a "road map" for recurrent NB. This is a waiting game now. We will have to wait on his counts to come up before next chemo can be scheduled.
Meanwhile I have been reading Anna's site (link below)--take a look at her story. What an incredible young woman. I am hoping Erik can meet her someday!
**ATTENTION**
-THIS IS ERIK'S FIRST JOURNAL-
(dun du du dun dun DUN!)
Hello everyone! Wow... I didn't know you could get stagefright from behind a computer... but when you're talking to thousands of people... I'M FINALLY POPULAR!
First off, as you can tell, I am feeling very good. So good in fact I overcame my lazyness and decided to write an update of my OWN. Not that Mom's were not very informative, inspirational, and... very long, but it's time I said something for myself. I am 20 years old after all, but with all the pampering from my Mom and future wife, Brandi... I feel like an infant. They won't even let me open my own letters for fear of papercuts. EVEN E-MAIL!
Thank you all so much for all your support, notes, prayers, well wishes, yummy dinners, and presents (I like presents) it feels like I have a source of unlimited support at this seems-like-would-be trying time. After all, it's terrible... cancer's a terrible thing!
Try convincing my nurses of that. I just got done parading up and down the hall with my new mowhawk (my hair started falling out today and we're having fun with it!), compliments of Brandi. I keep telling her, she would make a WONDERFUL cosmetologist... at least if mowhawks are the fashion these days. The nurses looked like they didn't quite know how to take it. I mean, maybe they assumed I'd be feeling sicker if I'm in the hospital and all... or maybe they got scared of me--or it could be that I'm the only one here on the oncology floor under 60... they have been treating me like I'm going to fall over any minute. Not enough exposure to young adults I guess... even though most of them are young adults... I don't understand it. Maybe fun isn't allowed on this floor.
So if I'm feeling so good, and SOMEHOW I've been able to read all the letters, e-mails, and posts on this site, you would think I'd be able to respond a little more quickly. But you know, I was feeling kind of sick lately, and low hemoglobin makes me tired all the time... and whine, whine, whine, excuse, excuse, excuse... I promise all of you, knowing full well how much effort you've put into me, that I will stop sitting in bed all the time watching movies, eating food, and getting fat... and will get back to ALL of you thousands of adoring fans... soon... hopefully... I think... I want to... I really do... I mean, I have to practice my grammer somehow. [thank you for this learning opportunity... brought to you by Sylvan Learning Center]
I've gotten notes from so many people lately--friends who continue to support me, family who are always there for me, family friends (I must be a hot topic for conversation!), people I don't know--and really want to get to know... you've all done so much for me and prayed so hard for me, I owe you all at least a letter--a PERSONAL letter. Not one of those write once, stamp everyone's name on it, and send them all off type letters. I appreciate everything you've done for me, and I will... get things done! Vote Erik!
Hope I don't get sick any time soon, because I want to keep writing and telling you all how much your prayers have been answered and how many miracles God has done in my life lately. Here's a great one:
Fact No.1) Normal white blood counts are between 4.5-11.0
Fact No.2) Mine dropped down to .09 while I was home
Fact No.3) A single bacteria could have given a fever that would send me to the hospital (my body is unable to fight it on it's own).
Fact No.4) Dr. Kobrinsky PROMISED that I would get a fever and get sent to the hospital while I was home.
Fact No.6) It's almost medically IMPOSSIBLE to be home in a very bacteria-filled world (with a five-year-old brother who loves to touch me all over my face) FOR AN ENTIRE WEEK and NOT spike a fever that would send me to a hospital in my condition.
Fact No.7) God delivers miracles and I do not have a fever.
I'm in the hospital right now because my counts are still dangerously low and they're worried that I might get a fever. But they were even lower while I was home! I haven't gotten a fever yet, impossible as that may be--could it be luck? If I was that lucky, I would have won the lottery five times in a row by now! Believe me, I already tried it once. The jackpot was Brand's lucky number too!
It feels like I've rediscovered my trust in God through these recent miracles. I know all of your prayers have been helping too! This bout of cancer has already done so much good for so many people--I can hardly call this suffering. All we need is that mustard seed of faith... and we'll all praise God for His power when He wipes my cancer away. There is one great thing that I've learned through all of this: when we trust, God delivers.
I'm worshiping God for his mercies, I'm praising Him for showing his might to everyone, I'm thanking Him for today, and letting Him worry about tomorrow.
And I'm thanking Brandi for the two really sweet beanies that she bought me today! You don't realize just how warm your hair keeps your head till it all just falls out! Keep Mom and Brandi in your prayers also as they show unfailing strength to take care of me all the time. Pray they don't get sick of my whining!
Love you all, God bless, and party on dudes!
Erik Ludwinski
ERIK NEEDS MORE PRAYER however. His counts are still all dangerously low. His white cell count is still 0.1 (normal is 4.5-10.5) and his platelets are 3 (normal is 125-400). His hemoglobin is 8.0, so he needed another red cell transfusion and another platelet transfusion. He had another (milder) reaction to the platelets today.
Dr. Kobrinsky admitted him to the hospital until his counts come up. His risk of bleeding and infection is too dangerous for him to stay home. Our concern is that his counts are still this low two weeks after chemo and 9 days after the neulasta shot that was supposed to stimulate white cell growth. PLEASE PRAY THAT HIS COUNTS COME UP SOON. The doctor is concerned his bone marrow may not recover. He does not know why his counts are staying so low, but may be because there were so few normal cells in the bone marrow, and the chemo has damaged too many of those few.
Obviously this is critical. His counts may come up right away, or may stay low for weeks, or may never come up. PLEASE PRAY FOR QUICK RECOVERY OF HIS BONE MARROW!
Dr. Kobrinsky also talked about another bone marrow transplant (provided Erik first goes into remission). He does not think Erik could survive another transplant using his own bone marrow, and wants to have Aron and Lesa typed to see if they match. Karl does not match. If you have read about bone marrow transplants using donor marrow, you already know how risky these are. Most have some degree of graft-versus-host disease (GVHD). We watched a boy die a horrible death in the next room from GVHD (donated by his sister). These all raise serious questions and we need your prayers for God to guide us in some very tough decisions down the road.
Thanks to a nudge by Bob and Ann Falconer, whose daughter Emily went through transplant at the same time as Erik in 1992, I contacted Dr. Lisa Diller. She is a doctor that Erik saw when he was treated at Dana Farber in Boston and is professor of pediatrics at Harvard Medical school. She is a member of the national Children's Oncology Group neuroblastoma steering committee. She emailed me and said she would contact Dr. Kobrinsky. She said she has not seen such a late relapse for this disease.
Last bit of news, looks like the tumor recurred only in the bone marrow (we think that is good but not really sure...more research needed on my part). The PET scan showed no tumors anywhere else. We all prayed it would be clear!
Thank you for your perserverance in caring for us, praying for Erik, and checking up on him. It means so much to us that you care. Keep the cards and notes coming. Erik loves to read your encouraging words.
Erik started writing a plan for music describing his feelings about cancer. He also wrote a long note to Steve, a fellow NDSU student now at U of M in traction and undergoing chemo for bone cancer. Brandi cleaned cabins yesterday and spent a little time with her family. We missed her!
This morning we get Erik's counts checked here in town. We hope he will not need any platelets, and that his white cell count is finally on the rise.
THANKS for praying and checking up on us!
I spent quite a bit of time reading up on current treatments for neuroblastoma. I also emailed one of his doctors at Dana Farber (Boston) who specializes in neuroblastoma, as well as late effects of childhood cancer treatment.
Tomorrow Erik will get counts checked again, and hopefully his counts will be on the rise.
Erik started a list of things he wants to do (Brandi hasn't been farther than Fargo, so #1 an #3 are really for her):
1. See Niagara Falls
2. Design a swimming pool
3. Go to Hawaii and see a luau
8 days in the hospital and clinic
2 days home
1 day at the hospital and clinic
2 days home
1 day at the hospital and clinic
Still no fever! Dr. Kobrinsky was VERY surprised when he saw Erik yesterday. He fully expected a fever and hospital stay long before now. Erik's white cell count is still zero, and has been dangerously low for a whole week!
We watched Erik closely for bleeding since his platelets are so low (normal is 125-400, he has 5).
Yesterday was another sit and wait kind of day. We left at 9 am and got home at 10 pm again. Sit in the car 3 hours, sit at the clinic 3 hours, sit in the hospital 7 hours. Erik did get platelets, and had a reaction (hives all over his body) as they were almost done. So they had to give him more benadryl and a steroid to prevent further reaction, and wait some more. The day unit at the hospital is in the basement, so there are no windows. It was such pretty day yesterday. We packed a lunch this time.
So here we are, planning to enjoy another day at home, and eat some of the yummy food that had been generously provided by dear friends.
Please continue to pray for God to protect Erik from any problems today and tonight! If he has no problems, he'll have his counts checked on Thursday and hopefully some will be on the rise by then.
We looked at photo albums last night and had some really good laughs. Paul and my brother David were almost always mistaken for brothers when we were all together in Galveston for family vacations. It was more the way they acted than anything else. Once a person asked them "Are you brothers?" and Paul accidently said, "No, he's my sister's brother."
A lesson from Jesus to us through Mary, Martha and Lazarus:
We praise God for His works in the PAST.
We stand firmly believing His promises for our FUTURE resurrection.
And we know that He shows His power in the PRESENT, as Martha said to Jesus:
"But even now I know that whatever You ask of God, God will give You." John 11:22
Later in vs 40 Jesus said to her: "Did I not say to you that if you would believe, you would see the glory of God?"
I am the resurrection and the life. He who believes in Me, though he may die, he shall live. And whoever lives and believes in Me shall never die. Do you believe this?
John 11:25-26
He alternates feeling really great with feeling so-so. Still quite tired, as is expected with low red cells. He ate TONS of the yummy chicken dish Kathy Merfeld brought over yesterday! Thanks Kathy! She organized a meal sign up for us at church.
Tomorrow we go back to Roger Maris in Fargo for platelets and hopefully they will take out the stitches for the line in his chest. It has been oozing the past couple days. I hate to see them pull off anymore tegaderm though, since he lost two pieces of skin already.
We have had LOTS AND LOTS AND LOTS AND LOTS of contacts about various alternative and nutritional therapies, which I will be continuously studying. Please pray for wisdom and God's guidance for every step of the way, especially for Erik. I admit this can be a touchy subject for me. I have read some pretty far out stuff (cancer comes from chickens and they can give it to trees...inject butter in your veins, it cures everything...alkaline water cures every disease...I have read literature on hundreds of such claims! Some people may be impressed by a little scientific lingo making ridiculous claims...not me!)
I think God heals in spite of our ignorance. I have no idea if the chemo, radiation, surgeries, and bone marrow transplant saved his life 12 years ago. I do know that each one is very dangerous and extremely harmful in the long run. God in His mercy spared Erik, and sustained Erik, and He will do it again if that is His will. Pray that God will give us clear guidance!
We will do the best we can for Erik, including making sure he gets the best possible nutrition. Dr. Kobrinsky's research interests are immunotherapy and causes of childhood leukemia. I am praying that he will have some immune boosting solutions to fight this cancer. It seems crazy to destroy the immune system with chemo, but when the bone marrrow is packed with tumor cells, drastic and immediate action is necessary. His immune system was severely compromised by the cancer in his bone marrow by the time we realized he was sick. So please pray for the best care and wise decisions, and don't hesitate to share any research you have uncovered, especially if it pertains to Erik's particular cancer. If you read up on advanced or stage 4 neuroblastoma, you will find it is a notoriously hard to cure cancer. In fact, the past 40 years have seen minimally improved survival rates. Erik's life is a miracle.
God reigns.
I will praise You, O Lord among the peoples;
I will sing to You among the nations.
For Your mercy reaches unto the heavens,
And Your truth unto the clouds.
Ps 57:9-10
So far so good! Erik is in excellent spirits and building legos with Brandi, Lesa and Aron right now.
Yesterday was such a long day. We left at 7 am for Fargo (no breakfast for Erik before the scan). At 9 am they took blood to check his counts. From 9:30 to 10 am two different nurses dug around 4 locations trying to start an IV for the nuclear med they inject before the PET scan. He had to sit in a dark room by himself, with his eyes closed for an hour and drink barium gunk, and because of delays, they made him wait in there two hours. (It was supposed to be one hour). I thought that is cruel to someone who has been handed such a horrible diagnosis recently. He prayed and did okay, but it seemed like forever. Then the scan it self took almost two hours, since they did head to toe.
After he got out of there FINALLY at 1 pm, he was starving, and needed to go to the day unit (admitted to the hospital for a day, I guess is the idea) at 2 pm to get two units of blood. They said he would surely spike a temp from the blood, since his counts are rock bottom. It took almost 6 hours for him to get the blood. The nurse changed the dressing on his Hickman, and pulled off a quarter-sized hunk of skin with the tape. Poor guy. That took until 8 pm. While we were there they announced a tornado warning and told everyone in the hospital to go to the basement...we were in the basement already so didn't have to move. We finally got home at 10 pm (a bit stormy on the drive) and braced for a fever in the middle of the night and a return to the hospital. But God is so good! No fever!
If you can perservere with us in prayer, please continue to ask God to protect him from infection and fever! His platelets are now below transfusion level of 20, so also please pray he does not bleed at all. He'll have to go back to Fargo immediately for platelet transfusion.
His stomach is finally feeling almost normal and he is feeling really good, just tired.
May God bless you immeasurably as you continue to hold Erik up in prayer.
Keep the notes coming! He loves reading them!
Yesterday Brandi and I reviewed some of the details from his cancer treatment when he was 6-7 years old. He was in the hospital 136 days, spent 70 days at the clinic, had 5 surgeries, 9 courses of chemo (all inpatient), 16 doses of radiation, and had an autologous bone marrow transplant (purged his own bone marrow). He received 17 platelet transfusions and 20 red cell transfusions. I had to give him a shot in his leg every day between chemos to stimulate white cell growth. He had numerous bone marrow biopsies, CT scans, MRI, and bone scans.
God spared him so many terrible side effects of the drugs. He has hearing damage, and a non-functioning kidney from the radiation, but his heart and pulmunary functions are good.
Can you believe all he has are good memories of this? He remembers all the attention, legos, playroom at the hospital, and a trip to Disney World. I always felt bad for the older people going through treatment...they didn't have a basket of toys in the clinic, and Batman didn't come to cheer them up!
May God comfort each person who faces this type of intense treatment. Remember to pray for Steve at U of M undergoing treatment for bone cancer--he is also an NDSU student diagnosed a few weeks ago, just engaged.
Thanks for your continuous prayers. God is listening!
Tomorrow we go to Roger Maris Cancer center for the CT/PET scan, and check Erik's counts. He may need platelets or red cells.
It has been so good to read the notes and feel uplifted by countless prayers. I remember feeling too exhausted when Erik went through this as a 6-7 year old to pray...but being so comforted by so many others who prayed for him.
Many of the posts are dear ones who walked this road with us 14 years ago. Praise God for standing with us once again.
Erik has been in pretty good spirits today (hmmm...results of a lot of prayer?) I have been nervous about the low counts, but he is very relaxed and eating better (he did throw up again earlier, but seems good now).
Pray for a smooth couple days until his counts start coming back up and we can all breathe easier!
Please pray today and tonight and the next couple days he will be protected from infection. The first sign is fever, and it usually escalates rapidy...and means emergency admission to hospital for IV antibiotics, which is 1.5 hours away. He would like to skip that scene.
His hemoglobin is 8.9 (transfusion required at 8.5) and platelets are 50, transfusion req. at 20.
Tomorrow we will go for the scan, hopefully he'll feel okay.
Hopefully by Monday his counts should start rising.
We sure appreciate everything! Prayers, cards, calls, food, visits, money, love, and offers of support. Had a delicious hotdish last night, and more meals coming. Robin Kriens started a prayer group for Erik last night...wow, this means so much to us that people are willing to gather to pray for Erik. God will show Himself powerful.
Glory to God.
Erik slept pretty well, little stomach discomfort yesterday. This morning we have to run to town to get his blood counts checked, and if they are good we can stay home today. If they are low he has to go back to Fargo (90 miles) for platelets or red cells this afternoon. Tomorrow he goes back for the CT/PET scan. Please pray for encouraging news.
I am really overwhelmed by the posts so many of you have written. What an incredible help to us in this difficult time. At bedtime we all gather to pray, and read the scriptures referred to in the posts. Powerful!
Erik is doing okay physically (just feels a little sick...lost his dinner last night) but emotionally it has been hard for all of us. Brandi took him out to A&W yesterday and they picked up more meds at the pharmacy. He is doing a lot of thinking, praying and talking about everything, and he is absorbing what all of this means. He's doing really well considering everything!!!!
Keep PRAYING!!!!
See PHOTOS...click on View Photos below.
Erik was discharged from the hospital on Monday afternoon, but since we had to go back for the gcsf (called neulasta) shot on Tuesday afternoon, we stayed in Brandi's apartment. That didn't work out so well. Erik was feeling really awful, and Brandi's roommate was trying to move out all her stuff and cleaning...not the best environment under the circumstances. Erik was naturally feeling really down, with the full force of everything hitting him. We spent a significant amount of time praying, crying, reading scripture and singing. It was hard but necessary.
It is a natural reaction to want to go to sleep to get away from the nightmare, shut out the world. We suggested going to the mall and walk around. He was extremely jittery from one of the anti-nausea drugs, and the line in his chest was bothering him. It was good to do something.
We went to JC Penney and Brandi bonght him a Pacman shirt and I bought him a shirt that says "Mr. Awesome."
Tuesday we went back to the cancer clinic and got his dressing changed, shot, and questiones answered. I am so thankful for Brandi, who wants to be a nurse--she helps keep track of everything extremely well. We have a whole bag full of meds for him to keep straight, and have a notebook full of information to absorb.
After we left the cancer clinic, we went back to Brandi's apartment to get the rest of our stuff and head home. While we were loading up I locked the keys in the car! Argh. Erik noticed that one of the windows was open a tiny bit, so we got it open with a hanger pretty easily.
We came home and Erik was comfortable on the 1.5 hour ride home. He still isn't feeling well, but he is not as violently sick as chemo can cause. One of the anti-nausea drugs called zofran comes in an "under-the-tongue" version, and costs almost $50 per pill! He was discharged with 6 pills (close to $300!), so hopefully no more nausea.
He is resting now, ate a little breakfast. I am hoping he will feel pretty good later today and we can get him out and active. We still haven't heard about the CT/PET scan, and we go to clinic here in town for blood work twice a week, so he will have counts checked tomorrow.
Aron (5) and Lesa (9) and Karl (15) are all happy to have Erik home, and they love having Brandi here too. Last night we all held hands and prayed, and all gave thanks to God for everything we could think of.
THANK YOU SO MUCH FOR PRAYING! Please ask God to heal Erik, and give him rest, comfort, and confidence in God's plan for him. Also pray for rest for Brandi...she is really exhausted. It has been a long week and a half since his first Dr. visit and hospital stay. His next scheduled chemo is June 6, and he will have another bone marrow biopsy to see if the chemo did anything. Pray for complete healing!
(A loose quote from C.S. Lewis)
Do you know what really makes me sad? There are people everywhere who deal with devastating circumstances who don't know God, who don't know that once our life belongs to Jesus, He is our Comforter, Strength, Truth, Purpose, and All. When I start to think how hard this situation is, I simply can't imagine dealing with life's ups and downs without knowing God has a purpose for Erik, Brandi, and all of us. He created us with a plan in mind, and His Power will be shown through our weakness. And yet some people still think we are all a product of chance...ultimately originating from a mud puddle! How tragic! That is the definition and origin of despair. Chaos, randomness, chance, all serving no purpose at all. Madness. How I pray that those suffering in such darkness will see the truth!
I thank God for the certainty of His promises. This is impossible to do without Him.
Erik is resting and staying ahead of the nausea right now. We are waiting to see if he will be discharged today, and return to cancer clinic tomorrow. They may schedule the CT/PET later this week.
Nothing is impossible with God.
I had the nicest visit with Dawn and Ariana and Debbie Spurlin this afternoon. They blessed me so much! Isn't God good? Erik was doing so well when they came, they couldn't believe how good he looked.
Erik asked that everyone pray that when they do the scan on Tuesday, he is healed and they can't find any trace of the cancer. We are encouraged that his blood chemistry looks better (lower uric acid, lower phosphorus, calcium a bit high) and platelets and red cells holding pretty steady. His white cells did take a drop today already from the chemo. Since he has been in, he has had much less pain in his pelvis and knees. I am praying that his body is fighting the cancer and already destroying it. If he miraculously survived the cancer before, why not ask God for another miracle? While we beg God for the future, we also thank Him for today.
Please be sure to read the journal history and guest book, and PLEASE share this site with everyone. It means the world to Erik that you are praying for him, posting notes to him, and care to keep up with his progress. This is such an important ministry to us!
He got his last doxirubicin (powerful chemo that can damage the heart and causes severe nausea) and now the vincristine (chemo that causes nerve and reflex damage and a host of other side effects) will slowly drip until tomorrow afternoon. His cytoxan (chemo causes nausea and bladder bleeding) finished yesterday. If he can drink and eat, he will be discharged in the afternoon, but has to go to the cancer clinic for the CT/PET scan and gcsf shot late Tuesday. I don't see how he will be able to drink the stuff required for the CT...but we'll see.
For those of you who are familiar with cancer treatment, you know chemo does a lot of horrible things (nausea, mouth sores, diarreah and dehydration, risk of infection and bleeding, etc etc etc) Please pray for an easy time for Erik. He is facing a lot of hospital time if he has a lot of problems.
May God richly bless each of you who are determined to uphold us and bear our burdens with us. This is the fellowship of suffering, which is the richest of all kinds of fellowship. This isn't a road to walk alone.
GO ERIK!!!!!!!
We give glory to God who is able to do exceedingly abundantly beyond all we ask or think.
If any of you feel led to fast and pray for Erik, please let him know.
He is getting five different meds for anti-nausea, but a couple make him really sleepy. I am sure they are helping somewhat, because he would be much worse. But he will not be able to go home until he can drink and eat.
Little known facts about Brandi and Erik:
They first met at the Relay for Life (American Cancer Society fundraiser) June 2002. They were both quite smitten, and Erik told her he had cancer when he was younger. With all the butterflies that go with talking to a cute guy, Brandi asked him with grave concern, sympathy, and batting eyelashes, "Did you survive?" Immediately she realized what she said and tried to fix it, but Erik said "No, I'm six feet under." They have been inseparable ever since.
At the next Relay for Life (June 2003) Erik was invited to be the guest speaker.
A couple weeks ago Erik and Brandi set their wedding date: November 19th, 2005.
Wednesday 5 pm admitted to the hospital. He ate a good dinner, and had a blood transfusion because his red cell count was dangerously low. This is because the tumor cells in the bone marrow crowded out the cells that make red cells. That night I went to do laundry--Erik had no clean clothes.
Thursday morning, we waited hours and hours to finally hear the diagnosis at 1:30 pm, which was recurrent neuroblastoma. Erik had no food since the night before because they wanted to put in a double lumen Hickman (line in chest into heart for chemos), which requires anesthesia. Finally at 3 pm he was taken down for the surgery. He was so hungry when he came out after the drugs wore off. He finally ate.
Friday he had more tests and "chemo" education, and started chemo at 3 pm. Paul and the kids finally got to visit, but since he is in an isolation room, they do not let kids under 14 visit, and siblings can visit briefly. Lesa was very disappointed because she wanted to play a game or something to cheer him up. Aron sobbed a long time in my arms because he remembered my grandmother had cancer, and she died. Aron and Lesa went with Brandi and I (while Paul and Karl stayed with Erik) and we cleared out everything from the house she was sitting, put things in her apartment, and bought some surprises for Erik. This took us three hours, and we both got showers which was great. Aron and Lesa were very sad leaving.
Saturday, Erik felt queasy and sleepy all day and ate and drank very little. I went and bought more necessary items for him, and he is in good spirits but feels icky. Brandi's mom and dad came to visit, and took her to clear out some items from her apartment.
Right now the plan is to get his last chemo tomorrow, be discharged on Monday, we'll stay in Brandi's apt Monday night so we can return to the cancer clinic on Tuesday for blood test, gcsf shot, and CT and PET scan. The thing I am concerned about is that he feels so sick from chemo, how is he going to drink that nasty stuff for the CT scan?
The reason for the scans is to have a rough baseline of all tumors, so they can decide if the chemo is working or not. Same reason they will do bone marrow biopsy before next chemo, scheduled for June 3. If he doesn't get a fever or dehydrated, he will stay home until next chemo. All of his chemo will be given in the hospital, and they want him to come to Roger Maris cancer clinic a couple times a week for blood tests and check ups. I am hoping we can arrange to do some of it in Park Rapids.
Yesterday I read in the paper about another NDSU student battling cancer. He is at U of M and is being treated for bone cancer. Check out the website www.gosteve.org that was set up by fellow classmates. He was diagnosed three weeks ago, and since then his friends raised $9000 for him selling t-shirts and bracelets to help pay for treatment costs! Please pray for Steve. He proposed to his girl friend Libby the day he was diagnosed. According to the news article, his particular cancer has a 60-80% chance of cure. I am hoping that somehow Brandi and Libby can connect, at least via email.
Please keep praying. God hears our cry.
Today Erik has a plane ticket for El Paso. Instead of building houses for the homeless in Juarez, he will fight cancer right here. I was so worried about the tearful goodbye at the airport, and how hard it would be for Brandi and Erik to say goodbye for the whole summer. What a sacrifice they were willing to make for his mission.
So today they are together, and we are thankful for today.
Thanks so much for the wonderful posts! Erik is sooooo excited about the messages. He was able to look at the site briefly yesterday (the computer is down the hall from his room), but they came and got him to start chemo at 3 pm, so he didn't get to read all the posts yet. I will try to get them printed out for him. He is in an isolation room and they don't want him going out or being exposed to any germs.
He would really like to write something for this journal, so hopefully later they will let him out to do that.
He feels a bit queasy this morning and has a headache. He is on three different drugs for nausea, one to protect his heart, one to protect his bladder, and three chemos. They are running copious quantities of fluid through him to protect his single kidney. How is he supposed to sleep if every 20 minutes he has to go?
Here is a quick synopsis of what transpired since last week.
On Sunday (Mother's Day) he came home to surprise me, even though he was studying for finals. He looked so pale and complained about pain in hips and knees. Immediately my worst fears resurfaced. I told him I'd make an appointment for Monday. He drove back to Fargo that afternoon to finish a programming assignment that was due on Monday, and came back Sunday night. I can't believe I let him go back.
Monday morning I called Dakota Clinic and got a jerky nurse who wouldn't give us a decent appointment. I called the oncology unit at Dakota in Fargo, and they said they were triple booked for another week, and I had to have a referal any way. I then called Vern Erickson's clinic, was able to get in to see Dr. Erickson at 3 pm, and I called back to see if we could have blood work done ahead of time so he could see the results when he saw us, and he agreed.
I brought a summary of his previous treatment. His red cell count was very low, border line transfusion, but he immediately called Roger Maris Cancer center right in front of us, talked to Dr. Steen (adult oncologist) and right when we walked int he door Dr. Kobrinsky (pediatric and adult oncologist) called and said come in the next day.
Tuesday he saw Dr. Kobrinsky, took more blood tests, x-rays, and had infusion of drug to lower uric acid (a by product of the cancer in his case). We moved Erik out of his dorm, took notes to the professors that Dr. K had written, and ate chinese food. We stayed at the house Brandi was sitting.
We came back early Wednesday for the bone marrow biopsy. (Big needle goes in both sides of his hip to remove bone marrow and bone). Dr. K thought it was lymphoma (a treatable kind) or leukemia (one kind is treatable, but it could have been AML, not good), and that we would know in a couple hours. At 10 am he came in and told us it is leukemia, but not sure which kind. He was stuck a total of six times for IV's which he really hates. We were in infusion room waiting for hours. At 2:00 they sent him to get echocardiogram (usually done before chemo) and that was an exhausting walk for him from the clinic to the other end of the hospital. They kept telling him he couldn't eat since they were hoping to get him in surgery for the Hickman, so back at the clinic by 3 pm (he hadn't eaten or drank since the chinese food) he was starving and they let him eat, so we ordered pizza and had it delivered to the clinic. A couple hours later he was admitted to the hospital, and Dr K stopped in to say they couldn't rule out neuroblastoma. He said we'd know for sure the next day by noon.
I'll have to finish this later. Be sure to read the journal history if you are new to this site!
Kepp praying!
Looks like he'll be here until Monday or Tuesday. He'll have to come back for gcsf shot, and then ride out the chemo effects for a couple weeks. Before the next round they will do CT and another bone marrow biopy to see if the chemo did anything at all, since right now the Dr said there are no normal cells in his bone marrow, it is so crowded with tumor cells.
He is doing really great. He was so chipper last night we couldn't get him to go to sleep until around 1 am! We'll have to try to reorient him out of his college sleeping pattern.
He looked at this site last night and was really excited about the posts everyone has left. Thanks so much for thinking of him and taking the time to write a note. It means a lot to him. He got a couple emails already from the interns who are going to serve with Casas por Cristo, and he was really touched. I am hoping he will be up to making posts here so you can see for yourself his amazing attitude, and Brandi too. There is so much to be grateful for.
God shows His power through our weakness. Keep praying.
Obviously you can see the miracle he was healthy 12 years later. It is easy to get complacent and take for granted the miracle.
Erik and Brandi and I took the news very hard. It is hard to face the same battle, knowing how hard the chemo is, and the fact that since he already had a bone marrow transplant, his immune system just isn't as strong.
Right after the Dr. gave us the news, Erik said "I think God is giving me a test like Gideon." He sent away the soldiers who were afraid, but the army was too BIG. Then He sent away more soldiers, but the army was still too BIG. When he only had 300 left God said now go fight the enemy, and God will win the battle.
We are left with that very truth. This is God's battle alone. We are much too weak to fight.
Please pray for easy time with the chemo. It will be very intense, and likely to make Erik very sick. Pray for him to keep his beautiful cheerful spirit. He and Brandi are marvelous to see together. They can make each other laugh all day long.
He had a double lumen hickman put in today so that he can get more than one chemo at a time, which will start tomorrow. They will giving him cisplatinum (causes more hearing damage and makes you incredibly sick), another he had before that causes heart damage, and another that is hard on the kidneys and bladder which is really bad since Erik only has one kidney since the radiation before transplant destroyed his right kidney. Chemo will last 3-4 days, then hopefully Erik will come home to recover before the next round.
Thank you so much for your prayers. It is all up to God. He is wise, beyond our understanding. We are thankful for His many blessings. Trying to not look too far down the road right now, but enjoy the blessings today.
I'll try to post more tomorrow, and explain what happened up til now.
Erik is resting comfortably, and Brandi is is doting on him, which he appreciates!
After we hear the final diagnosis (waiting on special stains on the bone marrow biopsy) Dr. K will order a port or hickman (line to heart for chemo) and start chemo immediately after it is in place.
Brandi and Erik are doing extremely well under the circumstances.
They both rested pretty well (Brandi stayed at the hospital and I went to the house she is sitting to do laundry--I don't think Erik did any laundry this semester--KIDDING). I slept well from midnight to 5 am, feel a little sick to my stomach, Brandi does too.
Erik will be here 3-5 days they said yesterday. One of his professors called immediately (ECE 173 computer programming class) and said Erik didn't need to take the final, he had an A in the class. That was nice. The rest we aren't sure about. Some might give him incomplete, which means he'll have to study and take the finals later.
Later, if I get a chance, I'll type the notes I have made the last few days.
God is good, all the time.
PLEASE PRAY.
----End of History----
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