{PBSC Donation}

See previous post here.

Today is donation day!

After being on the bone marrow registry for 2 years we got a call that there was a cancer patient that needed a bone marrow transplant and Mikey was his perfect match. A month and a half later and a lot of tests, pain, and prayers we are here in Cali for the donation!

He's always been our hero, but now he's going to be someone else's!

October 17, 2013 will always be a day that I remember...

When our wake up call came at 6 o'clock this morning we were both pretty awake and ready to do this. We needed to be at the hospital at 7, we were able to get a ride from the hotel golf cart for the couple of blocks to the hospital. It was nice that Mikey already knew his way around. We went to the check in desk and that is when I was first not impressed. The nurses and staff were all really busy and didn't say much to us except "are you here to donate? Okay...  just go find a place to sit in the room to the back and the left" with a frown and a bothered face. I guess I just thought we would be treated just as nice as when Mikey came to do the  donation physical. We went and found the room and it already had a couple sitting in there. (This is when we first realized there would be no privacy the rest of the day) We introduced ourselves to the older couple and found out that he had a bone cancer and was here today to donate to himself. They were super friendly and this wasn't their first time here so they were really sweet and shared their knowledge. After about 30 minutes we finally saw our nurse. She came in and went over the schedule for the day and had him order breakfast and lunch (none for me). She said she would be back after he ate to give him his last injection and then have someone come take another blood sample. This was a surprise to us and Mikey could barely handle thinking about one more blood test. He has had to have at least 8 blood samples done this far!

Breakfast came and another room buddy showed up. He was a college student there donating the same as Mikey. His nurse was really great and I was kinda jealous we didn't have her. Our nurse {Miss Cranky} was really bothered any time I asked a question... like really! She would do a long stare at me and then angrily answer my question.

Getting the LAST Fligrastim injection was the easiest one Mikey said 1- The nurse knew how to do it better than our home health nurse so there was a lot less pain and 2- He knew it was the last one for sure!! 

After more blood samples and waiting (a lot of waiting) it was time to go to the donation room. It was a room that had three beds with curtains dividing them. The room only had two chairs in it even though each patient is invited to bring a companion along with them. Our nurse made sure to point out that there were only two chairs in the room and that I might not want to stay in here the whole time. Really lady?! You think I'm just going to leave my husband in here?

Setting up the room, the machines, and all the IV's took awhile. Our home health nurse had done quite a number on Mikeys veins trying to get a blood sample so our nurse couldn't ever use that nice big vein because it was so bruised. Once she was able to get all the lines in it was close to 11 o'clock. 

The way that PBSC works is they place a needle in each arm and your blood is removed using pressure to pull it out of the vein. It then passes through tubing into a blood cell separator machine. The blood is spun at high speed and the cells separate into layers. The machine collects your bone marrow cells, some platelets, and some white blood cells. Your plasma and red blood cells are returned to your body through the other arm while PBSC is put into a collection bag. I think most people (including our room buddy- college boy, who elected for a PBSC donation instead of bone marrow donation) would choose this way of donation. But if the doctor would have given Mikey a choice he would have stayed as far away from PBSC as he could. He HATES needles and his veins would not relax and just let the machine take his blood. They continued to collapse several times and the nurse had to keep on trying different tricks to get his veins to cooperate. She had to keep on trading off which arm was the giver and which was the receiver.

It was so hard having a nurse that didn't want to talk to me when there was a machine's alarm going off every few minutes. I would text my mother in law pictures of his stats so she could let me know how she thought he was doing. He was in a lot of pain and we mentioned it to Miss Cranky Nurse several times, but she just kept saying "it should get better" and "there really isn't anything I can do". Come to find out when the head doctor made his rounds to come check on us and I mentioned that he was really in a lot of pain he said, "Oh there is no reason this needs to be painful, I'll order him something to help". But, Nurse Cranky only would give him half a does and when I asked later that day for more she just said a flat "No". She was awful!!!!

So after hours and hours, my poor hubby's donation was still not going very smoothly. There were several times when all three nurses would help work on him and try different tricks to get his veins to relax and cooperate. The older gentlemen that was donating to himself had a port that made it pretty simple to get the stem cells out, and college boys donation seemed to go well with his nurse that was on top of everything and awesome!

But he pushed through all the pain, the nerve wrecking alarms, and dealing with a cranky nurse. He really was such a rock-star all day!

When lunch arrived all the nurses brought their patients their lunches, but our nurse said he couldn't eat until after. Really?! So we watched everyone else eat with no real explanation of why he couldn't... 

It was 5:15 and FINALLY there were enough stem cells that the donation could be complete! Mikey got all unhooked and he was really pale and out of it. His nurse made him get up and sit in one of the chairs and finally offered him fluids and his lunch. Once again things that everyone else was being offered during donation. (I was bugged!)

After he finished lunch, we saw his bags of stem cells whisked away (Yay! Go and do your job stem cells!) We were then given all of his discharge paperwork and headed back to the hotel.

A trained courier will bring Mikey's cells to the patient who is waiting at a transplant center for them. The transplant needs to take place in one to two days after the donation.We don't know were the patient is but we do know he is in the United States. The patient will be awake to receive the cells and they are infused through an IV.  They say that most patients refer to transplant day as Day Zero or their "Second Birthday". The donated cells know exactly where to go in the recipients body. They move through the patients blood stream and settle in his bones. This is where the donated cells begin to grow and produce just what the patient needs to survive. We know it is a very scary and crucial time in the patient's life, and we couldn't be more grateful to be able to be a part of his healing process. We hope and pray that this will be a turning point for him.

When we got back to the hotel Mikey said he felt so relieved that it all really worked and that he could already feel major relief in his joints. He made some phone calls to concerned family members and fell asleep. I couldn't sleep and ordered us dinner up to the room, but could never convince him to wake up to eat it. When I went to bed about 11:00 he was still fast asleep. Then, about 12:30 I was woken up to him really sick. He was throwing up and couldn't stop. I was kinda freaked out... I went over all the discharge papers and this was not on any of the side-effects or what to expect lists. I called the hospital and explained what was going on, the on-call nurse said he would get in contact with the doctor and call us back. Ten minutes later and Mikey still throwing up I got a call from the doctor saying he thinks maybe he needs some fluids and we could come down to the hospital and get an IV set up. There was no way I was going to talk him into getting anymore IV's!! I told the doctor we would let them know if we were coming down.

At this time it was 1 o'clock in the morning and room service was closed. I went down to the front desk to ask if there was anywhere I could get a drink or snacks. He said that the bar was closing, but we could still hear people down there. I went down to the bar in my sweats and of course had no clue how to order anything. So I stood there awkwardly thinking that the waitress lady would come help me... she finally notice me and said I could just go up to the bartender and order... oh I felt so dumb!! But I got some crackers and a water and sprite and headed back to our room. Mikey was a complete mess. It was so heartbreaking seeing him like this after all he had just gone through today! By about 4am he had gotten out of the shower and tried to relax. I fell asleep and he stayed up just feeling awful.

When I woke up I thought there is no way we are getting on a flight today and planned to just call DKMS to reschedule our flights. But Mikey was ready to just be home! He was still not feeling good, but after talking with the hospital, he decided to just get on our morning flight. The chauffeur wasn't suppose to pick us up until 10am, but the front desk called and said he was waiting for us at 9:30. We started to pack up our things and clean up the room the best we could.

Once we made it to the airport I got a call from DKMS seeing how Mikey was doing and if we were planning to go home. I updated her on his night, but explained he was ready to be home. 

The flight went smoothly and Mikey continued to feel slightly better.

When we got home the boys were still at my mom's house, but had helped her "Heart Attack" our door for their dad! It was such a sweet surprise and we can't wait to snuggle those boys!

He has kept it easy for most of the day and all my info from the doctor says after 7-10 days most donors reported they felt back to normal.

We both feel so grateful for all the love and support of our great family and friends. All the texts and calls of encouragement were such a blessing and really helped. Mikey truly is my hero and I'm so lucky he is mine. He has been so strong and unconditionally giving throughout this whole process. We both know we wouldn't have made it through this without the strength and blessings of a loving heavenly father. Now we just hope and pray that these stem cells will go and do just what the patient needs! Prayers to you, wherever you are!

***Update*** 12/09/13 Email from DKMS
Hi Michael!

I hope this email finds you well. We just received the first update on how your recipient is doing, and I of course wanted to share it with you. Just so you know what to expect, the information we get in these types of updates is always very general and does not give us anything in the way of detail, but what it does tell us is that: 

1.The patient has engrafted your donor cells. This means that your transplanted stem cells have begun reproducing new blood cells inside of his body.

2. His recovery has been proceeding as expected, and he has encountered no serious complications so far.

3. The patient has been discharged from the hospital. His transplant center reports that he is doing quite well overall, and that he has been taking walks outside every day (this is a great sign of returning strength!).

This is certainly encouraging news, and I just hope it feels good for you to hear how much of a difference all of your effort has made to your patient as he begins to regain his health.

***Update***  02/25/14
We received a sweet hand written card from the patient's family today! It doesn't say much... because DKMS has very strict restrictions on what you are allowed to say and don't want you sharing anything personal. It was really neat to get something from them though, and to know that he is continuing to heal.

{Off To The Donation}

See previous post here.

Well, we said goodbye to these cute faces and left for the airport.

This is the first time we have left them for more than one night and I wanted to send them lots of pics so they could know what we were up to while we were away. Hence the 100 pics on my phone of us at the airport ;)

Mikey's pain was increasing a lot at the airport. His poor hips were just aching and causing him to walk like a 90 year old man. I kinda wish I had a video, It was a funny sight for me to see, but I also felt terrible especially through the flight when there wasn't any moving or adjusting room at all. He got the window seat and I got the middle seat next to a nice businessman.

When we finally landed in Cali and the same chauffeur was waiting for us that picked up Mikey when he came out for the physical a couple of weeks ago. DKMS actually did a really good job with all the travel arrangements and having the chauffeur made things run very smooth.

On our way to the hotel we drove past some missionaries and the beautiful San Diego temple. It made me want to make sure we get to come back soon! It is absolutely gorgeous here!

After getting all checked in at our pretty hotel we decided to go walk and see if we could find the beach. Walking seems to really help Mikey with all the pain in his joints...

But it ended up being a lot farther of a walk than we thought! We did luck out and make it in time to see the sunset! Which was breathtaking!

By the time we got back to the hotel it was pretty late and Mikey was just done. We debated about eating at the hotel restaurant or just ordering food to our room, but decided it was really our only chance to try the restaurant.

We were both starving and everything on the menu was really fancy and tiny portions... we were both pretty disappointed in our meals sadly and grabbed some treats on our way up to the room from the gift shop to help fill us up. 

Tomorrows the big day and we are off the bed... hoping Mikey can get some rest and our nerves will let us sleep.

See next post here

{Filgrastim Injections 1-4}

See previous post here.

Sunday was Mikey's first filgrastim injection. We were suppose to start injections two weeks ago, but we got a call from DKMS that the patient had gotten worse or caught a sickness and was unable to move forward at the time. This was such shock and made us so sad for him and his family. They said that they did not know if/when the donation would take place. Last week we received the call saying the patient's doctor has decided that the patient will be strong enough for the donation to move forward. Meaning that the patient will start receiving extremely high levels of chemo and radiation therapy to destroy the disease cells. After the 6-12 days of treatment the patient needs to receive the transplant or there is almost no chance of survival after destroying all the good and bad cells in their body.

Mikey got his first Filgrastim injection on Sunday. Normally you would have your first injection at a hospital (in case of an allergic reaction to the medication) and the rest they would hire a nurse to come to your home or workplace.  DKMS tried to contact Hospitals and Insta Cares here in Utah to set up the the first injection, but no one would agree to give it. They did find a home health company that agreed to have one of their nurses give the 4 injections at our home. We were kinda nervous not to be at the hospital, but they did send a 2 pack of EpiPens in case he did end up having any reaction, which he didn't! Mikey's Brother is severely allergic to bee's and works as a tree trimmer and has been without EpiPens for quite some time because of the cost of them. So we felt blessed that we could pass those on to him. We fell in love with the nurse that came to our home. She was so sweet, but not the best Phlebotomist...

Sunday she had to take a blood sample. Mikey has nice great big veins and she couldn't get them to "cooperate". After poking him four times and really messing up his veins, she got some blood to collect. This didn't help his nerves and how terrified he was. He turned completely white and had to go lay down for a bit. When he came back it was time for his first injection. They do the dosage by weight and you can only inject so much in one area. So he really ended up getting 3 injections! One in each shoulder and one in the stomach. Oh the poor guy! It was no fun! We had dropped our boys off at their Grandma and Papa Ferguson's so the house could be little quieter,  after we had finished with all the paperwork we went and picked them up. I was surprised that Mikey felt good enough to go with me. He really was feeling fine until about 4 hours later. Then started the bone aches and major joint pain. The side effects that are common to feel is headache, nausea, trouble sleeping, and joint and bone pain. That night was a hard one for him. His lower back was very sore, even sore to the touch. 

Monday, she arrived and just took vitals, documented his symptoms, and gave the injections. His pain was pretty bad, he didn't make it to school that day, and just felt crummy all day like he had the flu.

Tuesday, same thing vitals, documented his symptoms, and gave the injections. Again he felt too crummy to go to school. The pain seemed to be getting worse, which means that the medication is working (taking the bone marrow out of the bones and bringing it into the bloodstream). His shoulders are hurting, and his lower back, knees, and ribs even hurt to the touch. He also has had a major headache all day.

Wednesday (Today), The nurse arrived at 11:00 because our flight leaves at 3:00 today, usually she has come at 7:00 or so at night so there isn't going to be as much time between the injections. I'm hoping that this doesn't cause him any extra pain especially on the flight. Sitting is really hard for him, his hips seem to ache more when he is sitting. It isn't that long of a flight, but I know it's going to be rough on him. The nurse took his vitals, documented his symptoms, and gave him his 3 injections. He's almost done with them!

See next post here

{Donation Physical}

See previous post here.

Mikey flew out yesterday to California for the Bone marrow/PBSC donation physical. I guess the doctor who is over the donation has to pass Mikey's health off and make sure he is good to go. Since the donation can't take place in Utah, out to Cali he went! DKMS will take care of all the expenses related to the trip. They just don't pay for a companion to go with him, which was sad for me. He has been so good at keeping me updated and sending lots of pictures my way though!

When he landed at the airport he had a car service waiting for him... A guy in a suit holding a "Ferguson" sign and the whole shebang! He drove a nice blacked out Lincoln, which was really cool!

The driver took him straight to the hotel where Mikey was able to check in, eat, and stay the night.

The beautiful pool at the hotel!

The next morning he needed to be at the hospital at 8 am. The hotel offered a golf cart to take him the few blocks to the hospital.

The physical went well. He said everyone took really good care of him and made sure he was in and out fast. He had a nurse assigned to him to help him get everywhere and answer all his and my questions. He had an EKG, chest x-rays, Dr exam, and blood work done. 

The car service was scheduled to pick him up later that afternoon. Mikey was able to chill at the hospital and use their internet to work on homework until he met the chauffeur at the hotel. 

We missed having him around, I know it was only one night and we got to skype him, but we're so happy he will be back home with us soon!

See next post here

{DKMS Phone Conference}

See previous post here.

 Today we had our phone conference with our coordinator from DKMS to have all our questions and concerns answered about donating. They sent us a large information packet to help us understand the processes, side effects, and procedures. We went over all this info this weekend and shared our news with our families. We wrote down all our questions and concerns so that they could be answered in our phone call.

We had no idea that there was more than one way to donate your bone marrow. We just always pictured that they surgically take it from your lower hips/spine. Come to find out that 70% of bone marrow donations are now being done are PBSC donations. This process is done under a clinical research study reported to the FDA. (Sounds kinda scary) In order to be able to donate PBSC you need to get your stem cells out of the bone marrow and into the blood stream, they make this happen by giving you an injection every day for 5 days before the donation. The medicine is called Filgrastim, which is usually used to treat cancer patients to boost their blood cell counts. On the 5th day of the injection, which is also donation day your stem cells are collected through a process called apheresis. A needle is placed into each arm and blood is removed from a vein in one arm and passed through tubing into a blood cell separator machine. The blood is spun at high speed and the cells separate into layers. The machine collects PBSC, some platelets, and some white blood cells. Your plasma and red blood cells are returned to your body through the other arm while PBSC is put into a collection bag. This process can take 6+ hours.

When our DKMS coordinator called she was able to tell us a little about the patient Mikey was donating to, and tell us that the doctor was asking for the donation to be a PBSC donation. This was a lot for us to take in. Remember Mikey hates needles!

We wanted to know all about this Filgrastim medicine, side effects, the donation, the physical. To say the least we probably overwhelmed her with questions. From the answers we got, I got the feeling that she was most likely new to her job and didn't have very many answers. Luckily there was contact information for the donor advocacy program in our info packet. We were able to contact them and have our concerns lessened and questions answered. They were very helpful. Talking with our coordinator she informed us that there is not a donation hospital in Utah and that the closest centers would be in Colorado or California. So for the pre-donation physical they would need to fly Mikey out to the donation hospital to meet with the doctor, and that for the actual donation they would fly me and Mikey out. All expenses are covered by DKMS and the patient's insurance.

Today there was a lot to take in... the doctor wanting a PBSC donation, flying to Cali or Colorado for the donation, and all that would in tell in the coming weeks. We both still feel like this is an answer to someones pray and it really isn't an option to deny someone a new chance at life. So we move forward!
Sending prayers of love to the patient!

See the next post here

{Blood Work + Match News}

See previous post here.

The next step in becoming the bone marrow donor was to have blood work done.

Mikey went to UVRMC to get his blood work done and sent off for testing. Mikey is terrified of needles! So this was not easy to accept that he had to get his blood drawn. I've tried to sign us up to give blood at our local blood drives and sneakily get him to donate, but it backfired on me and he said it terrified him to think that I would get poked... so neither of us ended up donating. But today he was so brave!! They took like 7 vials and said they would send it back to DKMS for testing. There was a little confusion when we first got to the hospital, they said that they hadn't ever had a bone marrow donor before. So it took them a while to figure out what they were supposed to be doing. (It shows how rare it is to be a match!) The nurse was really sweet, she said her husband and her both have been on the registry for 8+ years with no call and was kinda jealous of Mikey!

Today we got a call back for DKMS saying that the Doctor received the results from the blood work and that Mikey is the best match to the patient and an almost perfect match. They would like to move forward with him as the donor!! Wow! I'm still getting chills as I write this. The registry is a worldwide database. You can save someones life in any part of the world. This amazes me! The next step is to have a one hour phone call with our DKMS coordinator to get all the info and commit to donation. Obviously you can choose at any time not to donate, but once the patient is so far into treatment there is no turning back for them and they will die without your donation. So they ask that you really think about your decision before moving forward.

See the next post here

{An Unexpected Call}

Let me start out by going back two years ago...

We were watching Extreme Home Makeover, and it was about this darling little 7 yr old boy Jonah Gomez. He was fighting leukemia and needed a bone marrow transplant. No one in his family was a match and they had searched the world wide bone marrow registry with no match found. This really hit home for us. My cousin at 14 yrs old was fighting leukemia, and Mikey's grandma had leukemia. Jonah lives in Utah and we both just felt this undeniable need to get on the registry. That night we got online and went to deletebloodcancer.org and ordered out swab kit. Just a few weeks later it came in the mail and we swabbed our cheeks and sent our DNA on its way. 

Now two years later after we had almost completely forgot about being on the registry, Mikey received a phone call, a package delivered at our house, and an e-mail from DKMS all in the matter of hours. Telling us that there is someone that Mikey is a potential match for!!  They need some blood samples to really make sure that Mikey is the match they want, and will be the best match for the patient. They also sent him lots of medical history questions they need him to fill out, to make sure the donation will be safe for him and the patient.

This is not what we were thinking would be on our fall agenda, but if Mikey is the perfect match the transplant will need to take place in the next 2-3 months. We both are just amazed that this has come up. Really not the best timing with Mikey in one of his hardest semesters at school, and we're just trying to stay afloat financially. We are both excited, nervous, and feel very strongly that we should move forward with testing.

You can visit DKMS Americas or Be the Match to order your own swab kit and get on the registry!

See the next update here