About the same

Quick update:

Stephen is still in ICU.  He has stayed about the same the last couple of days.  He’s getting help breathing, using a feeding tube and receiving steroids with his regular medicines.   They have had to make a few adjustments.  His bronch tube was too low and was causing him to cough so that was raised, his feeding tube came partially out and so they replaced it today and they have been making constant adjustments to the breathing machine (don’t know the name for it!).  Tonight I feel like everything is in place for him to rest peacefully and hopefully do some serious healing.

Each day they are doing x-rays, blood tests, kidney tests, and more and more tests.  They are very carefully monitoring the interaction of all the medications and the effect on his organs.

We really need these steroids to work!   The doctors are continuing to stick with the steroids as the treatment plan for the next couple of days.

I’ll post if anything changes.  Have a great Sunday!

 

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Hope is shining!

Dear Family, Friends, and supporters of Stephen all around the world –

Just a quick update.  Stephen is showing some signs of improvement this morning.  They have his oxygen down to 40% .  His breathing patterns are better and he is more relaxed.  They gave him some sleep aids and he was able to get a lot more sleep last night.  He will get a chest x-ray and further testing later today (they do it everyday).   I may post again then.  It is just too tiring to call and text more than a couple of people.

The Cancer doctors are researching a medicine that can be used if the condition worsens. His condition has very little data on it and so it will be a difficult decision whether to use it or not.  For those of you who are in the medical field or med students, the drug is called: etanercept.  The medical condition that they think Stephen has is called: GVHD IPS (idiopathic pneumonitis syndrome or in some articles, idiopathic pneumonia syndrome).  It is a rare but documented type of graft verses host.  If he continues to improve with the steriods, then they will not need to use the drug.  Praying that the steroids will work!!!!!!  Go Steriods GO!

We are praying and exercising our faith in the power of the God who can make the lame walk and the blind see.   I know he can and will heal Stephen if Stephen’s time on this earth is not complete.  We have receive indisputable evidence that God is aware of us and is aware of Stephen.  Knowing that God is all-powerful, and that He is aware of our situation, we can conclude with peace that His will, will be done.

Much love to you all from LDS ICU

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A new room in ICU

Wow.  A lot has happened since I last posted.   After the last post, Stephen’s throat began to heal but then he seemed to stay the same for several days.  He could swallow, but would often throw up what he drank.  His throat was irritated, he started coughing, and felt short of breath.  He had some water retention but it got better with meds and less fluids.

Monday morning he had been up and was really panting hard while getting back into bed.  I hooked up a spare oxygen monitor and checked his oxygen level.  It was at 75.  Everyone at the hospital did a great job of reacting quickly, getting him on oxygen, giving a breathing treatment and other supportive measures.   Doctors and Nurses had listened to his lungs multiple times a day and they were completely clear sounding so pneumonia wasn’t suspected.   Cardiology came up and did an EKG and then Radiology took him down for a CT scan with contrast.  The CT scan showed major involvement of fluid in the air sacs of his lungs.  Basically his entire right lung and over 50% of his left lung had fluid in the air sacs.   He was working so hard to breath and his oxygen levels were struggling to stay up even with oxygen support.  He was taken in for a bronchoscopy to look at his lungs and take some samples of the cells.  These were sent for testing.  The decision was made to move him to the ICU for more support.   In ICU the pulmonary doctor checked him and talked to us about his situation.  He was taking about 80 breaths per minute.  The doctor explained that he was exhausting all his physical and mental energy breathing.  He also showed me how his chest and stomach were moving opposite each other as he struggled to breathe.  He felt like we should move toward putting him on some assisted breathing.  He didn’t want to wait until it was an emergency.  We agreed and by they time they were ready to intubate him he was really getting tired.  Neither Stephen nor I expected how difficult this would be.  I’ll spare you the details but it was really rough for a few hours then.  Luckily Jeff arrived as this all began.  After Stephen’s body adjusted to the sensation of the tube in his mouth and throat, lots of medication to calm the body, and Stephen learning how to breath through a straw, things began to settle down.  It took an incredible effort on Stephen’s part to get his head wrapped around his current situation and to start fighting.  He did a great job.  For the first 12 hours or so he would cough fluids up from his lungs and would have to have assisted suction.  To begin with, it was about every 15 minutes.  Then, about every 45 minutes, and now he only needs help with coughing or suction every few hours.  He did an amazing job.  Much better than me – I ended up with a migraine and had to go sleep in his old bed in the BMT for 5 hours till I could see straight again!  Good thing Dad’s are tougher than Mom’s at some things.   The ICU has a great team of doctors and nurses.  They have had Stephen up walking twice (it takes 4 people to walk with him), they had him sit in a chair twice, and have been very helpful and supportive of any breathing problems.  The source of the Pneumonia is the real question.  Labs, cultures, and other tests have all come back negative.  There isn’t a virus, bacteria, fungus or parasite that they can blame the pneumonia on.  Given these results, the conclusion is that the pneumonia is a result of graft vs host disease.  One of the possible symptoms, (a rare one of course) is pneumonia for no-good-reason syndrome.  It is actually an inflammatory response caused by the battle with the donor cells.   It is treated with high doses of steroids.  So tonight, they started him on his first dose of steroids.    I’m writing this with my limited understanding (and lack of sleep) so if my story changes tomorrow, you’ll know why.

The BMT floor has quotes hanging  on the walls.  One has become my favorite this week.  It reads “When you think about quitting, think about why you’ve kept going this far.”  Cancer patients are endurance athletes in a sport that isn’t so fun.

Stephen has received a couple of very special Priesthood blessings in the past week.  They have really given him strength to face his current situation.  We are so thankful for your continued prayers.  I have thought about it several times today.  I’m so involved in what is going on I can hardly form a prayer longer than a few words.  I find great comfort in knowing that all of you are able to pause and pray for us.  We love you!

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The armies are back for the fight!

The last few days have been pretty rough but thanks to dilaudid, epinephrine breathing treatments, cool mist humidifier, ativan, and a host of other medications, a lot of patience, and the goodness of God, he made it through.

Today his neutrophils are up to 600 so he is considered ‘engrafted.’  His throat sores have improved. This morning he was able to drink some warm apple cider.  It was still very painful but it went down.  It’s a major milestone to be able to swallow.

The next steps we are watching for in the process are for his blood counts to continue to climb on their own, his sores to continue healing, and in general – improvement in overall health that will allow them to start taking him off medications.   During these next weeks they will be monitoring him closely for signs of Graft verses Host disease.  There should be a little battle from the donor cells but not enough to cause him to get a rash, upset digestive system, or aching joints.  The two main organs that graft vs host disease affect are the skin and the lining of the digestive system.   Patients can have anything from no symptoms to very severe symptoms.

We are happy to be this far down the road.  One day at a time.

Even though this is my third time watching the engraftment of stem cells this year, it still amazes me.  When the body begins to produce blood cells, it’s ability to heal itself is incredible.  Once again it reaffirmed my believe that our bodies are created by God.  The complexity and beauty of the interactions of the body is beyond genius, it is God-like.

Thank you again for all of your prayers for Stephen and our family.  We are truly blessed to have so many people around the world praying for us.  We love you all and we pray that God will bless you for your goodness.

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The good, the bad, and the ugly at the BMT

Past time for an update.  After the transplant Josh felt so happy it was like the weight of the world was lifted off his shoulders.  Other than a little soreness in his leg he didn’t have any problems.  He got right back home and back to playing.

Stephen felt great for several days.  His blood counts didn’t hit bottom until a few days ago.  He has been receiving blood and platelets as needed to keep his counts high enough.   Last Thursday he started to feel some mouth and throat sores coming on.  It is called mucositis and it is an ugly, mean thing.   He started on pain meds but by late Friday night he was in lots of pain and couldn’t swallow anything.  They have him on a pain pump and he uses a suction tube to remove saliva from his mouth.  We had a scary night Friday.  He felt like his throat was closing off. He was a little better Saturday and Sunday but had another really hard time Sunday night.  He is receiving IV Nutrition and all medicines are IV now.   The swelling in his throat was really bad this morning and they considered moving him to ICU but we have avoided that so far.  He was scheduled for one more chemotherapy this morning but they cancelled that.  The chemo therapy postpones the engraftment which decreases your chances of getting graft verses host disease.  The doctors decided that it was too risky to give him more chemo for fear of his airway closing off and they are going to go ahead and let the engraftment proceed.  We’ve been taking turns sitting with him at the hospital making sure his breathing and pain are controlled.  Just a rough spot that we hopefully we be through soon.  Thanks for all the inquiries and especially thanks for all your prayers.

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Transplant Complete

bagOn the 21st Stephen started to recieve regular doses of Chemo.  The combination is called buflu.  The real name is busulfan and fludarabine.  It is given during the night at 2 am and 3 am so they can draw blood samples by 6 am, send them to Seatle and have the results back by the end of the business day.  This blood test measures how much of the drug is being metabolized.  He tolerated the chemo very well.

On the 22nd Josh started coming up to LDS Hospital every morning to get a Nupagen shot.  The Nupagen makes your bone marrow over-produce stem cells.  The excess cells leak into the bloodstream.  He got this shot every morning up through the 26th.

Christmas Eve Jeff stayed with Stephen at the hospital while the rest of us went to a McGuire (my family) Christmas Party.  Then we all came up to the hospital and opened our suprise gifts…Christmas Pajamas. What a suprise!  Jennie slept over at the hospital with him.  On Christmas day, we were able to check Stephen out of the hosptial for a few hours.  His immune system hasn’t been diminished yet and so they let him leave around 10 am and return at 8 pm.  It sure made our Christmas day wonderful.  Jeff took Josh up at 8:30 am for his shot, then they brought Stephen and Jennie home with them.  We waited for them and then went in to see what Santa had brought and opened presents together.  Stephen was feeling great and ate a full Christmas dinner. It was truely a wonderful Christmas gift to have all our children together at home on Christmas day.

On the 26th Jeff and I took Josh to Primary Children’s Hospital and checked in around 8 am.  Josh wasn’t supposed to eat or drink after midnight.  On the way to the hospital he confessed that he had a mini milky way bar on his way out the door.   I guess he ‘forgot’ for a brief moment.  Ahhh!  We told the doctor and nurse and they said that he will just have to have his line placed without being fully sedated.  It all worked out.  I’m glad he told us.  They used a numbing gel on the area and then gave him a small dose of Versed.  The operating room was decorated like the Jazz locker room.  It was really cool.  One wall had mural on it and the others were painted like lockers.  The cabinets were all painted like lockers as well.  When he was on the OR table and looked up at the ceiling, several Jazz players had signed tiles.  So he lay on the table looking up and trying to find different players names.  We left him there and they brought him out about 20 minutes later.  He had a line placed in his femeral artery with 2 access lines on it.  Then we went up to his room and started the apheresis.  It is a fasinating process.  It went quite well.  Once during the collection he got a clot in his line and they had to stop and inject the line with something to dissolve the clot.  It took about an hour and then we were off and running again.  He got kind of sick  so they gave him some benydrl and he slept through the rest of the process.  I woke him up as he finished so he could see the bag of cells and plasma.  When the nurse told him he was done for the day he threw one arm up and yelled ‘victory’  and then fell back asleep.  It was really funny.  He felt great after the apheresis was finished and we just watched TV and he played on his PS Vita.   About 10 pm they called to tell us that they had enough cells and so he was definately finished. They needed over 5 thousand and had 6.6 thousand.  He was so happy.  The nurse gave us the choice of sleeping there and going home in the morning or going home right then.  He was out of there as fast as possible.  He couldn’t wait to get back home.  It was a huge sense of relief to have this finished.  Josh is one happy 10 year old right now. We are really proud of how well Josh handled it.  It was a lot to think about and go through.  He was tough emotionally and really hung in there till it was done.

Today is Stephen’s 4th birthday this year.  His first birthday was May 2nd when he recieved his own stem cells in his first tansplant.  Then June 9th, his actual ‘birth’ date.  July 24th, his second transplant day.  And finally, December 27th – the day he and Josh share stem cells.   He was given several medicines to prepare his body for the stem cells.  For the most part, they are all used to suppress the immune system so that it doesn’t immediately attack the donor stem cells.   About 1 pm Red Cross arrived with his cells.  It took about 30 minutes to recieve them.  He immediatly got sick.  He started throwing up and so he got some adavan as well.  This put him to sleep for about 4 hours.  When he woke up he felt much better.  He ate a full dinner tonight and enjoyed his ‘birthday’ cake that the food services sent him.  Now we are chilling and watching BYU Basketball.  It’s a great day to have over with.  The transplant is done.

The next days, weeks, and months will be the real story.  How Stephen’s body reacts to the new cells, when the stem cells engraft, how much do the donor cells fight with his body, how much graft-vs-host disease presents itself, and if the new cells able to recognize and kill cancer cells.  We will deal with each day as it comes.  For now we will enjoy the moment and know that several major steps are behind us.

Love to you all!

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Post Correction

Sorry – my last post was sent to subscribers before I finished typing it.  I’m not sure how to update it and send a new notification.  So I’m just posting a new post with a  to the last post.  Hopefully that will work and you will get the right information.  Click the link below and it should take you to the corrected post!

https://supportstephen.wordpress.com/2012/12/20/3rd-transplant-underway/

 

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