Tag Archives: transplant

The Struggle is SO Real

This past week was horrid. Lots of mix-ups, including miscommunications at the hospital and among the doctors of our clinic. I ended up on the phone with our Allo Nurse for about an hour and a half yesterday after I sent an email to our doctor (who read it on vacation and asked her to please call me) about how things had been unacceptable as of late.

Cancer aware

It has also proven to be the most taxing ride our bodies, minds and souls have ever taken. Literally, Mark got super sick on Monday April 14th… today is the 16th of September!!! If anyone asked me if I thought we could last this long when it all started, I would have guessed- no. This has been five solid months of uncertainty, pain, heartache, grieving, surrendering to a life completely different from your intentions and plans and trying the entire time to have some sort of acceptance and some sort of strong fight as well as the ability to continually go with the flow and not allow yourself to succumb to the negativity and the suckyness of the situation. At times, I have run hard or done some kickboxing to fight through my emotions. Many times, I close my eyes and remember how it felt to allow myself to float in the waters of Belize as we snorkeled. Most of the time, though, my body seems to be struggling just to get through a day, let alone add to it any type of real workout.

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Until you come up against this kind of battle yourself, a life and death situation that lingers, I feel like it’s impossible to imagine all that goes along with it.

It gets more and more difficult for me to take care of the everyday little things in life- laundry, changing light bulbs, cooking, cleaning… these are all demands that by the time I come home to spend time with my girls seem so meaningless…. unimportant…. I ask myself, is this really what I want to spend the little energy I have left on?  I have to remind myself that my girls need a home that is warm and inviting and letting them know that they are cared for. I do what I feel I need to do and then I feel like collapsing.

Sunday, I spent about 2 1/2 hours bawling in bed. I literally said, “I feel like I want to quit eating and die a slow death.”  If I had not had some friends reach out to me, I may have called the doctor yesterday and asked for some medication. (Y’all know I don’t take medication!) Yesterday I went to Denver and Mark fell apart in my arms twice. Ladies and gents, this has gotten to this point. We need held up. The psychologist has told us we need to be in this boat together riding the hard waves of this great storm. If our family separates and we each stay in our own boat, we are just going to drift apart and ride the waves alone. So, we are riding together. We are having difficult talks, we are being honest with each other about our emotions and what is happening as we go through this as individuals and as a family.

It’s weird, because we don’t at all expect people to get it unless they have lived it and to try to find words to explain it all just doesn’t work. There really are no words that can express the difficulty of this.  I wouldn’t wish anything like this on my worst enemy, I can tell you that. And I try to remind myself, that when this is over, we will be able to use what we have been through to help others. I look back and remember how God has provided all along and I remind myself to trust Him still and that He is always good and will take care of us.

This battle has been long and hard, and it’s not over my friends. I was raised not to make more work for other people and so it is hard to feel like that keeps happening. My family keeps needing…We got the good word that cancer was gone last Friday, only to face the worst week we have had so far. At least with the diagnosis in the beginning, although unexpected, we had a definite plan of attack and we knew what to expect in many ways…

At this point, no one really knows what to expect. The doctor’s analogy is that it’s like being in a war and going through a mine field. You never know what you will step on at this point….

Mark is having what looked like Graft V. Host Disease from his endoscopies. His intestines are VERY fragile. He is in a TON of pain! Stem Cell transplants are different from other transplants in that they are not rejected by the body, rather, the stem cells reject the body and fight it as they adjust to their new home. It’s not all bad that this happens as it also means that they will attack cancer cells, but it is more than hard to be Mark Neu right now and have this new battle happening within your body, having not had much time with friends to speak of in months and missing your kids and your wife when they are away…and it is very hard to be me right now feeling torn as I live again (Still)  trying to take the best care I can of Mark in Denver and our daughters in Firestone. I can’t speak for my girls, but I just cry when I imagine their lives. So, if you are involved in our lives, I just want to prepare you, just about anything is possible right now if you are around us- but I think what all of us needs the very most is prayer, lots of hugs and unconditional love.

I hope you can continue to hang in there with us and be there with us. As I read in my studies, it is just as I suspected, PEOPLE NEED PEOPLE. It’s so much worse to go through something like this alone. You would much rather have someone look you in the eye with fear or tears and tell you the honest truth that this shit scares them, they feel helpless or don’t know what to do or that they don’t like to see you like this and wish you were healthy but be present, than to just disappear and have to go through all of this feeling isolated and alone.

Cancer punch

CANCER, I HATE YOU!!!!!!!!!! I ABSOLUTELY HATE YOU!!!!!!!!!!!!

 

Day +3

It’s July 18th. That means it’s been three months to the day that we checked into PSL. We are also at Day +3 or 3 days after transplant.

Mark woke up this morning feeling a bit better than he had. He turned on TV, talked more, sat up a bit. He ate a little peanut butter toast and had some tea. He continued to do well, by getting in some walking and we even played a couple games of checkers. Dinner by candle light – no just dinner for two at the cute little table in our room. (Which means he got up out of bed) Chicken Noodle Soup and a little bit of Beef Stroganoff on the menu, followed by a little bit of sitting and cuddling in Callico’s futon/chair.

We have a joke with the doctors in our room. He gets a chemo called methotrexate on Day+1, +3, +6 and +11. It can give you Mucositis – mouth sores and since I had trouble remembering the name-we just refer to it as “meth”. Yes, the jokes continue in room 3304. After all, laughter is the best medicine. 😉

 

Hoping in the LORD

Good morning. This is my mantra now. This is my focus. I hold on to the promise that when we focus on God, we can overcome- Rise Up, like an Eagle soaring over a storm….. I made this picture to hang up in our hospital room this morning as he slept. Art is a sort of therapy for me…. and sometimes, it ends up being a blessing to someone else. 🙂

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Well, today began Busulfan chemo. It comes every 6 hours by IV for 2 hours over the next four days. He will be given other medicines that work as prophylactics to help the possible side effects before the first dose came this morning at 6am. After four days of this, he will begin getting Cytoxan once a day for three days over the course of a two hour time period each day. One day of rest, and then on July 15th- he will receive his new stem cells.

Nikayta was reading the drug info yesterday and said she understood that the Busulfan would kill fast growing cancer cells and the next drug, Cytoxan, helps prevent them from coming back- but she wished they didn’t have all the possible side effects. Smart girl.

Our family really never takes drugs and so this is a new thing for us and it’s scary reading all the side effects and then all the side effects of the prophylactics, too…. I guess this is what happens when a hippie chick and her family get thrown into the medical world!

So, we are praying that the chemo does it’s job to the cancer but that he stays as healthy as possible. We are praying that mentally and emotionally this next 30 days is not too unbearable. You see, this time, he is on a MUCH smaller wing and he is no longer allowed off the floor or to go outside. This is tough for a young, otherwise healthy salesman type person!

If, in an effort to help keep his spirits up, if you would like to send him something, or come by for a visit, it would be SO much appreciated! You must be healthy to visit and cannot have been around a sick person. He cannot have any real flowers or plants, but balloons are fine as is pretty much anything else that is man made. 🙂 Prepackaged food is also fine.

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Presbyterian St. Luke’s Medical Center

Mark Neu Room 3304

1719 E 19th Ave

Denver, Colorado 80218

You can call or text him also. People need people-that’s for sure and it’s just about like living in isolation around here unless you have a visitor. 🙂

THANK YOU ALL!!! We have held on to every call, every text, every card, every meal, every visit, every donation ….. everything you do (no matter how big or small) that shows us your love has made a HUGE difference in our fight and we can’t tell you how much we appreciate YOU being in this with us!!

 

 

Kick it in to High Gear – Preparing for Battle

Hi! Today is Monday, June 30th. Today we go to the doctor to get blood levels checked and tomorrow we go again to have the way the Busulfan chemo they will be using metabolizes in Mark’s body so they can give him the dosage rate that will work best for him. We have one week before we delve into the “transplant process”. Spelled out by readmitting to the hospital on Monday, July 7th, BuCy chemo on Tuesday, July 8th, a day of rest on Monday, July 14th and Transplant on Tuesday, July 15th. Apparently, from what they say, Mark’s hardest time may be the two weeks following transplant when his levels are low and the new stem cells work to take over the place of his old. Right about the time he is being released from the hospital, my girls and I will be taking our oldest, Shyanna to her college to begin the new and exciting chapter of her life about 4.5 hours away from us.

So, this morning I read a little devotional page shared by a friend on Facebook from a book entitled “Keeping God in the Small Stuff”. It may seem odd, but I believe this is the next purchase I will make for our family. (We have been doing something weekly together to keep our focus though we are separated distance wise most of the time, we realize how important it is to stay together in our faith as we fight together in this battle.) The thing is, that one of the biggest lessons we have learned so far is that we NEED to focus little. Step by step. One day at a time. There is just too much that overwhelms you when you get ahead and try to take on too much with something like this.

This is the passage shared today:

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It reminded me of the fact that over and over again in my life, when i have come to a challenging time, I have had to sort of “Shift Gears”.  I told my girls recently, this same sort of thing. The Bible is clear. Jesus told his disciples, ” In this world, you WILL have trouble.” He didn’t say you might, or could…. “YOU WILL. But, take heart, for I have overcome the world.” So, as I read this today, I was moved. Moved and I reflected. I wish I could say I had it all together all the time. But, I don’t. I absolutely don’t. But, what I will say, is that God created me to adapt and change and this is what I want to share.

When I was getting ready during labor to push, I always took a minute to pause and throw my hair up in a pony tail. I was preparing for the workout ahead. When I teach fitness classes, I warm up, to prepare. When we drive in the mountains, our vehicle is used to a more flat and constant ride. Suddenly, we are climbing and descending very steep inclines and declines. What is necessary? SHIFTING GEARS.

Mountain roads

Recently, before this battle, I faced another littler battle. I had to stand up and against something very dear to my heart. I felt the need to stand up for those who weren’t standing up for themselves and who felt bullied and pushed around. It was a tough decision, as I knew that it would cause me to lose friends, but I also knew that it would be hard to look myself in the mirror if I stood by and did nothing when I knew how these people with less power (or seemingly less power) continued to feel powerless. I understood that God himself would not want this to continue and that if it was so heavy on my heart, it was for good reason. I filled myself up on God’s truth about defending others- especially those who need it. About being courageous and about the importance of lifting others up and encouraging them. I went into a battle filled with truth and focused on the love I had for those who were smaller- those who needed someone to help them. I didn’t like the battle, but I saw it as necessary and so, I went forward after filling myself up on God’s word and with much prayer.

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Now, we are preparing for the battle of our lives, and this little passage reminded me of the importance of the shifting of gears again. Of the preparation needed to be ready. So, my focus is that this is where we are and what we need to focus on isn’t where we are and what is going on- but on GOD.

Isaiah 40:31
… but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Oddly enough, this is the same verse I have already shared with two of our girls. Our oldest, as she heads to college at Chadron State to play basketball for the Eagles and to learn all she can about Human Biology before heading to Med School. Our third daughter as she is a runner… and feels like God made her to run- how fitting this verse was for her as she discovered this calling.

Isaiah 40:31 might just be my new life verse. I need my strength renewed. I need my hope to be in the Lord. I close my eyes and picture soaring on the winds beneath like an eagle… hitting that pace in my run where I feel like I can just keep going – it’s a good pace. This is my prayer for our whole family right now.

God, help our family to focus on the hope we have in the Lord. Let our strength be renewed daily and even minute by minute and second by second as we focus on our hope in Him. Let us run this marathon and not grow weary. Let the winds and the turbulence lift us and carry us higher that we might soar on top of it. In Jesus’ name I pray. Amen.

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Getting Ready for the Marathon and More

Phew! Tired. Today we took in a whole lot of info in a short amount  of time.

Before they discharged Mark yesterday, they gave us papers to look over so that we could be ready with questions today and then sign consent forms should we agree to move forward with the Stem Cell Transplant. Even though we did that, it was another thing entirely to listen to the Coordinating Nurse and the Transplant Oncology Doctor say all of it out loud, again.

So, the bottom line is this:

Mark has AML with a MLL which makes it a tougher kind of leukemia. He also has malfunction with chromosome 11 which is one they (doctors) really don’t like. (So, we don’t either.) Next, he did not go into remission with the first round of chemotherapy. This combination makes him a high risk case. However, he is young and otherwise very healthy so instead of them grouping him in the 10-25%% cure category, they are saying 20-50%. These are better odds and MUCH better than just chemo alone which would give him less than a 5% chance for a cure.

Sounds heavy, huh? Well, my mom said, “Sombodies have had to beat the odds or there wouldn’t be a range of 10-25% to talk about, and it’s about time those numbers move up a notch or two!”  I told Mark that he’s the batter and he can hit out of the park! My brother, Steve said, ” Cavs had a 1.0037% chance to land 1 pick … and they got it, bottom line- any chance is all he needs.”  My friend Robin said, “There are always people who break through the stats. That will be Mark.” God says, “All things are possible.”

So, the doctor compared this to a marathon. He said after that one month in the hospital before having to live in Denver, it would be considered one mile of that marathon. He also said we could compare it to a Mine Field. You have to go out into the field, but it is full of mines you try to avoid- Infection, Relapse, Graft V. Host Disease…. He said the infection possibilities are limitless and crazy sometimes and that there are many different ways GVHD transpires and different levels. Short term and long term side effects are not uncommon from medicines and chemo.

The doctor said that we always worry about relapse. He said our first goal is getting through the first 100 days. Then a year, then we get greedy and try to get more.

So, this is the long and short of it. This transplant is one of the most medically complicated procedures. They basically replace Mark’s immune system and bone marrow. His DNA will soon read out as the DNA of his donor. He will have to begin getting all of his childhood vaccines again after a year post transplant when his immune system can handle the shots.

For those who have a medical background- they are using Busulfan and Cyclophosphamide for his guns blazing chemo going back in beginning on July 8th. His regimen will last 6 days, he will get one day of “rest” and then the very next day, July 15th, they will put stem cells in just like they would a bag of blood or platelets.

He will continue on many medications including Immunosuppresants and antivirals, antibacterials and anti fungal as long as they feel he needs them.

For now, we enjoy the next 10 days he is at home. When he goes back in, he will be in the hospital for one month and then be living in Denver by the hospital about 100 days.

Today, Mark signed all those papers to continue with transplant and this battle we are fighting.  It was more time consuming and had more signatures than anything we have had to sign for so far in life. Then, we did just as he wanted and went to a late lunch at Olive Garden!

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Please continue to pray. He has been so positive. Pray he continues to be. He has responded well to chemo with little side effects, please pray that continues. His blasts are below 5% at only 2% right now…. please pray that the next chemo destroys all it is supposed to to allow the new stem cells to come in and take over. Pray for graft v. leukemia instead of graft v host disease. Pray for health and wellness in every way possible- physically, mentally, emotionally and spiritually for Mark, but also for our whole family. Please pray that our insurance covers the housing in Denver. We have appealed it as originally  they said no and it is necessary. (We are hoping for an answer early next week.)

THANK YOU SO MUCH for all you have done so far and THANK YOU SO MUCH FOR PRAYERS and money you have sent, texts, calls, cards, time you have given us, events you have put on and will be putting on to help us raise funds. WE ARE SO BLESSED!

 

 

 

 

The Path None of Us Planned

We are moving forward!

Mark is in the hospital until his blood levels ANC (Absolute Neutrophil Count) comes up. So that he can have a little break before Transplant, they discharge him for a time. We are hoping that the time is soon because we have a tentative schedule, that as long as the donor can work within the dates they have requested (to get his physical, start getting his shots to stimulate his bone marrow to produce stem cells and then the date to actually donate the actual stem cells), we have an action plan for Mark.

Here is what we are looking at- August looks pretty blank, but mid-August, about 30 days after transplant, is most likely when Mark will be discharged to living in a place close to the hospital in Denver for about 100 days. WE ARE STILL PRAYING THE INSURANCE COMPANY WILL AGREE TO COVER THIS! 🙂

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Other than that, now you know what we know.

Because this time we know about the readmit and sort of have a plan going into this, we are able to plan a bit for our girls as well.

Starting in August when he is discharged to live in Denver, he will need 24/7 care. We have had some wonderful people (both family and friends – our framily) step up to offer to come a week at a time to let me have a

break. I will always still be involved as his primary caregiver, but I can at least leave Denver

then, to come home and take care of things around our house and our daughters. We also have a few friends in our area, who will come on the weeks I am in Denver doing 24/7 care, to give me a break, or let me come home or whatever. We truly are blessed by these people who put their own needs aside to come and serve our family in our greatest time of need.

Shyanna will leave for college pretty close to the time that he is discharged in August, so it will be strange having one less girl at the house (well, really two less, as her bff Alexis practically lives with us, too.) I will take her to college with my other three girls August 14, 15 and 16. This will be a HUGE weekend for us with Mark being newly discharged and all the emotion that brings and our oldest heading off to college about 4.5 hours from home and all of the emotion that brings! (Mark was cute, and has already asked one of our over 6 foot friends to walk around campus with us so the guys think Shyanna has a big dad! lol)

This time of life, is really NOTHING like any of us planned, but we continue to try to stay focused on what is positive and good. We have gone from being virtually a family that does EVERYTHING together with our kids ALWAYS having at least one parent there (often we have had to split up to attend their activities) to a family who has part-time parents at best, sometimes. But, we are doing what we can.

Our goal is to continue to keep Mark as positive, safe and healthy as possible, and to keep life as close to regular for our daughters. We are in constant communication with them. We

know and understand how much this has shaken up our lives and we do not want to do any more shaking than necessary. We have had people to offer to come and live with us, but during this time, that would just be another adjustment everyone would have to make. So, we have a wonderful community with an amazing friend stepping up again to help plan for needs and with meals that will be home cooked and delivered,

toiletries and snacks will be provided, and even people who have volunteered to stay with Mark so I can go cheer them on, or others who will take our place and become their biggest fans at their events and games. We are truly blessed and I am reminded that friends in many ways become your family when you live far away …. And we have many loving family members who are doing what they can for us from a distance.

AS ALWAYS PRAYERS are SO appreciated and needed as we keep moving along down this path that none of us planned.

Yes, I jumbled this up on purpose as an expression of our lives being jumbled up right now. 🙂

HOORAY!!! What’s Next?

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I like this picture. Although it is cute, I don’t agree with the name it claim it philosophy. I realize that just because as a kid I wanted ice cream and said I was getting some, my parents had the final say. I believe it is the same with God, as our heavenly Father. I do believe He wants what is best for us always, but I also know His ways are not always my ways and that I will not always get something  simply because I want it or believe I will get it. However, I am extremely thankful to announce:

HOORAYYYY!! Today our sweet doctor came in to happily announce that Mark’s bone marrow is E.M.P.T.Y.!!!!!  Everything is gone, including cancer!!! That’s right- NO CANCER!!! Thank you for your prayers!!

So, we are waiting for his ANC counts – total neutrophils- to come up so that he can come home for a spell before transplant. They will be contacting the best of the best donor that they have chosen, a 21 year old strapping young lad with even the same blood type as Mark, to get his very precise physical done and a date for him to begin shots to stimulate his stem cells and push them out into the peripheral blood where they can be collected and then taken in for transplant and given to Mark.

Praise God, I cannot express in words what a relief it was to hear these words!

no-cancer-sign

What’s next? Once his level comes up (they want him to have something to fight illness, and be able to clot blood, etc. he will be given a little break to come home and spend some time with us. During this time some tests and preparations will be made to ensure he is in good shape and good to go for the next BIG GUNS run of chemotherapy which will wipe out every nook and cranny of his marrow to allow the stem cells from the donor to enter the marrow and take over for Mark’s. The tests for Mark will in total take about a day to a day and a half.

The donor (we will not know who it is for a year), will go through their own set of tests and prepare as stated above to give stem cells. (It is like giving blood and as the blood comes out, it goes through a machine that pulls out stem cells and gives everything else back to the donor) then they refrigerate the stem cells and get them to Mark within 24-48 hours. (Where ever in the world they are coming from.) I cannot wait to meet this young guy who is so willing to give of himself to help save a stranger’s life!

So, as you continue to pray, please pray for Mark’s health, the health of the donor, the transplant to go well and the insurance to approve the 3 month housing Mark needs to stay close to the hospital once he is released from the hospital one month after transplant!

We are blessed to have people all over the world praying!

THANK YOU Tag Cloud (card thanks greetings gratitude welcome)

Where ever you are That’s where you’ll be….

Here, we are. We were just blessed with a four day weekend with Mark at home. Friday, we actually spent half the day in the hospital- and then came home – the day before graduation! AND the day our second daughter turned 17!! <3

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I cannot express with words how good it was and how thankful we were to have him home for graduation- but I believe this picture of our Graduate with her daddy does:

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Sunday, we asked for some time alone with just the six of us after church for the day. We needed that time desperately, and though I feel we need even more, our time is quickly running out.

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Today, Memorial Day is a day we will spend with Mark home again – adding back in his dad, step-mom, mom, sister and nephew. I woke up this morning crying, thinking, “I really wish we could all be home together longer.” However, I will take what I can get and truly am thankful for the time we have.

It’s important to our youngest daughter today that we go down to the park and play basketball today so he can watch her. She misses hearing him yell from the stands at her games, and since he has to go back tomorrow, he won’t be there next weekend to do that. FaceTime is wonderful, but it is not quite the same.

I enjoyed cooking for Mark yesterday- a big ole breakfast, some pasta stuff at lunch and his request for Pot Roast last night. This morning, he has asked for Sausage Gravy over biscuits which we lean red how to make while living in Oklahoma. He has often said to me over the last few weeks, “I don’t think anyone else would have stuck with me all this time through all we have been through.” Our soon to be 22 years together have been spent in Columbus, Ohio. Pryor, Oklahoma. Canton, Ohio. Romeoville, Illinois. Firestone, Colorado.

So, this is the news we have for you and it isn’t exactly what we were hoping but as with everything Mark encounters, he has pointed out what the “good news is”.

Tomorrow morning, we need to go back to the hospital. He will begin a new 5 day regimen of chemo- a bit stronger than the last 7 day treatment as there were still cancer cells found in his last bone marrow biopsy. They told us that out of the space consisting of cells which is about 40% , 40% of that has leukemia in it. So, we need to get rid of it!

This could be a very long process. According to my notes, after this round, there could be a 3-4 week recovery period. There is a 40-50% chance according to doctors of this putting it in remission. Our hope, is of course, that is does and that we have a donor by that time so they can get him ready for transplant with one more round of the kick-butt chemo that will clear out every nook and cranny and get him the transplant. (That is when the 30 days in the hospital and then 100 more days living in Denver would take place.)

When I add all that up- it looks like we are looking at 5 months, with everything happening as we are hoping and praying it will. When you ask Mark, he will tell you, that the good news is we will just go right through this and get it done. Badah boom, Badah bing. Chemo, chemo, transplant, recover, home. Game over.

So, DONOR and REMISSION are our two big prayer requests still- and we thank you for joining us.

 

 

Donor News

I just copy and paste these emails to keep you updated. Beyond this last email, we have a friend in town named Todd who paid for his own kit at bonemarrowtest.com and has gotten his own results and will be getting them to Joan, our coordinator, for her people to look at and see if he might be a fit for Mark.

Here is the latest email from Joan sent to me on 5-19-14. Please join us in prayer that one of these people Todd, or the other two gents Joan speaks of will be a 10/10 match for Mark! THANK YOU!

“Hi Calico,
It’s always good to hear from you.
So here is your weekly update on the donor status. 5 donors were requested to have further testing done. So far a 25 year old male has been tested on May 15th. We will probably get those results this week. There is also a 21 year old male who will go to his lab for testing tomorrow on the 20th.
The three other donors are all male. Slightly older at 36 years, 38 and 47 years. They have not made appointments to have their blood tested yet.
All we need is one so we’ll see what our 21 and 25 year old look like once we get their results back.

I am going to have Kristi our social worker meet or speak with you and Mark about the housing. Our financial coordinator said the Aetna only pays for housing when the patient lives at least 100 miles away. We have options though so don’t panic. That’s what Kristi will explore with you both.

I understand that Mark must be going stir crazy. Counts continue to be low. Dr. Muffly said that she was going to make sure he was out of the hospital for the graduation no matter.

This is very, very hard for both of you. Hang in there with us. We’re getting closer to our goal.

Best to you sweetie J
Joan”