August 27 Post

Halleluiah! The catheter is out!

We showed up for blood work this morning at Saint Joe Med Center and as we were waiting Austin contemplated the possibility that his numbers had lapsed and that he would need another treatment, or at least would be sporting the pheresis catheter over another weekend.

The doctor met with us by 9:30am with the opening question, "Are you ready to get that thing out?" Austin's labs indicated sustainability with a few increases, which means "goodbye plasmapheresis!" I think Austin was in shock because all he could say is "really?"

The process for removal wan't nearly as invasive as when it was put in. We were sent to the nephrology center near the hospital and were on our way by 11:00am. Austin needs to be careful over the next three days as the opening heals that the catheter inhabited for over a month. His first possibility for a shower is Sunday morning. Kind of gives a ring to Tony Campolo's message "It's Friday - but Sunday's Comin'!"

We have a followup appointment in Goshen to review results of bone marrow biopsy (which we heard looked fine) and most probably set up a schedule for blood work to ensure the healing process stays on track.

As I shared in the last post, stay tuned for information about a blood/plasma drive, and thank you, thank you, thank you to everyone - doctors, nurses, family, and friends for your expertise, help, prayers and support over the last month! ritch

August 24 Post

Great news! We showed up at Saint Joe Hospital this morning and learned that several key blood count numbers not only sustained but improved! As the doctor started sharing the numbers I found myself doing fist pumps and saying "YES!" after every one. Even white blood cell count improved which is so great because Austin has been considered at high risk for infection. After labs we were sent home with the news that we won't need to return until Friday - with the possibility of removing Austin's pheresis catheter.

Char and I are rejoicing with the news - for this moment and day, while, as you can imagine, it's difficult for Austin to be optimistic since he has had to deal with so much bad news - and he is currently experiencing discomfort from yesterday's bone marrow biopsy. We thank God for answered prayer and continued strength for the journey, even as we anxiously await the results of the biopsy.

We continue express our thanks to everyone who has supported us on this mysterious and difficult journey. We also want to let you know that we are checking into the possibility of a plasma/blood drive "Austin Gives Back" to encourage everyone who would like to be a part of replenishing their local blood banks as a "THANK YOU!" for all that he has received that has truly been life-giving. We'll let you know what develops. ritch

August 23, 2010

Hey Everyone, so I survived the bone marrow biopsy, thankfully without extensive pain. Now the wait begins to find out what the results are. I have an appointment next Tuesday, August 31st with the blood Dr. where I will find out what is going on hopefully. Meanwhile I will continue to go to the hospital for catheter care, blood analysis and possibly plasma treatments if necessary. Thanks for your continued thoughts and prayers.

Austin

August 20th, Post 2

Hey everyone, this is Austin, I wanted to give you my take on what happened today. The Dr.'s announcement about a possible change in my plasma treatments was news to me. Before today there was not even really a possibility to not have it. The Dr. is waiting to see what the results of the biopsy are, and could decide that my catheter could come out in the next few weeks which is huge. With the catheter out I will feel a lot better. It is yet another step of my recovery process that I look forward to immensely. I am rather nervous about the whole bone marrow biopsy, I am not a big fan of needles. I am truly hoping that the biopsy brings some clarity to what is going on inside my body and helps explain why my white blood cell and red blood cell counts are low. I am kind of weary of getting tests done, I feel like I have had just about every test on my blood that there is. One thing I have thought about lately is that I should not take for granted the care that I am getting and complain about it. As much as I do not enjoy hospitals, needles, doctors, medical care and all that goes with it, I have been truly blessed to even be able to receive care at hospitals with doctors that know what they are doing and nurses who care. Not to mention having health insurance, which is a rather contested issue in the U.S. today. This journey has been a rough one and has definitely tested me. Prayers for the biopsy would be appreciated and also for my catheter that I can put up with it as long as necessary and that nothing goes wrong with it, that would not be good. Also, my classes will start on August 30th, so that brings a new dynamic into the picture which is a little unsettling but I am still committed to trying school with hopes that my recovery continues. Here is a shout out to everyone who has prayed or done anything for me in the past several weeks, THANK YOU, your support has meant a lot.

August 20, 2010

Austin had his 21 plasma treatment this morning and was pleased to hear some new plans for next weeks schedule. The Dr. would like to move to taking blood first thing in the morning and if his blood levels haven't changed, he'll NOT have to have plasma treatment that day. Austin could get into that! :) The thought that he may someday in the near future have his catheter out and have a real shower brought a big smile to his face. Much depends on the results of the bone marrow biopsy which he will be having on Monday morning (August 23) at 9:30am.

We continue to pray for protection from any infection and God's peace to cover Austin throughout this unknown journey. We continue to feel your prayers. Thank you.

August 19 Post

Another step of the journey today as we met with Dr.Westbrook, a blood specialist, at the Goshen Cancer Center. Though most of Austin's blood numbers have moved into low-normal range, white blood cells remain dangerously low and doctors are looking for answers.

With more blood tests we left the hospital with a plan that includes a bone marrow biopsy to be scheduled sometime next week. We probably won't know the results of this test until another week. Plasma transfer is to continue until next Monday with another attempt to start weening down.

As we chase answers for low white count (and heightened risk of infection,) we all struggle with emotional and spiritual resolve, and Austin is physically groaning at the thought of yet another needle. No matter what, We know God's care and love is with us and each of you as we walk this walk. ritch

August 16, 2010

Sunday gave Austin a good break from giving blood after feeling like he gave a major donation on Saturday morning when he went for blood work requested before meeting with the blood specialist on Thursday. The tech that took his blood joked with him about having track marks ... that's a new one for him. :)

He bravely went through another treatment this morning. Today's blood work showed similar numbers to last Friday so at least those that are lagging didn't get farther behind. He will continue with treatment as planned three times this week and hopefully the Dr appointment on Thursday can further inform where to go from here.

Several prayer requests would be that Austin can continue to hang in there with his catheter...as time goes on, he is really bothered by it. Also that Austin would have a peace as he thinks about this health journey and college starting in two weeks. Thanks for your support and prayers.

August 13, 2010

It was an early Friday morning with Austin leaving the house at 6:45 to head for plasma treatment in South Bend this morning. Austin does not like that his mom is a morning person and is actually happy at that time of the day. :) Along with the treatment the Dr. ordered lots more blood tests. His white blood cells, platelet count and hemoglobin continue to be low. Since we had last talked the Dr. was able to get hold of an expert in the plasma treatment field and also talked with a blood specialist. They do not believe that the falling white blood cell count is due to his treatment or a secondary response to his illness SO he is scheduled to see Dr. Westbrook, a blood specialist in Goshen next Thursday. She has ordered more blood tests which Austin specializes in these days. :)

Also because of his low count they are asking him to hang low and not be around alot of people or eat fresh fruits and vegetables for the time being. Right now he is planning to go back for treatment Monday, Wednesday and Friday of next week again. The journey feels long. We continue to pray for protection from infection, that Austin may not be bothered so much by his catheter and that even in the midst of this confusing time we can trust God to know what Austin needs. Thank you for your thoughts and prayers.

August 11, 2010

In the last two days we have been reminded that things don't always turn out how you hope or even how you or the Dr. have planned. After Monday Austin was hopeful that he would only need one more treatment for the rest of the week on Thursday as the Dr. was working on weaning him down. He got a phone call by noon on Tuesday saying his morning blood work up at Goshen Hospital had indicated that his platelet count was dropping and he needed to come in at 7:30am the next day (Wed) for another treatment. So we headed to the hospital this morning for his 17th plasma treatment. The doctor met with us to talk further about new concerns from the blood work this week. He sees a pattern in both his platelets and his white blood cells that show significant dropping. The white blood cell issue is not a usual issue with this disease so the Dr. was contacting a blood specialist and he was also contacting the national plasma center for their input.

We're not sure what it all means but it leaves us feeling unsettled and aware that we need to continue to trust God as we really don't have control. Austin is working on coming to terms with letting go of his desire to return to work in the next several weeks and is now praying that he will be able to start school the end of August. His body and his mental state are tired right now.
Please continue to pray for him, for protection from infection or further illness, for the doctors to have wisdom to know how to continue treating him and for him to have a peace that is beyond human understanding. He will go in for treatment again on Friday. Thank you for continuing to lift us up.

August 9 Post

Day started with blood work at Saint Joe Regional at 8am. Had to wait on labs and plasma so treatment didn't begin until 1pm. Didn't get home until around 4pm. All numbers continue to improve except for platelets and white blood cells. Hemoglobin actually went up on its own without any additional units of blood and Austin's weight went down again which means swelling is subsiding. As you can see, we have really had to learn how to read numbers with some needing to go down and others up as signs of healing.

The plan this week is for daily blood tests at Goshen Hospital and then back to Mishawaka on Thursday. Plasmapheresis on Thursday will depend on numbers, and the doctor's plan is to keep Austin's port in until Monday of next week - with the possibility of taking it out, which will be a day of rejoicing whenever it arrives.

We are all recognizing this week the mental toll for all of us, but especially Austin, who is experiencing increasing discomfort with the port. We are trying to gradually work on a plan that will help keep his spirits as well as his body on the road to healing. Returning to work by this weekend or early next week, with some restrictions, might be the best medicine - along with attending worship, which he was able to do last Sunday for the first time.

Pray that we will be wise in achieving the right balance as we work with Austin to begin adding work and activities back into his life. We also pray that this process will result in a complete victory over the toxins invaded his bloodstream so that there will be no future remission. Your love, faith, and prayers sustain us. Blessings and grace to each of you. ritch

August 6, 2010

We're celebrating that Austin has completed a week of outpatient treatment and is looking at having a TWO day break from going to the hospital or having his blood drawn. Yeah! He has been on the every other day plasma treatment regime for this week and we're very pleased that his numbers have continued to stablize, some even in the normal range! His hemoglobin and his white blood cell count continue to lag BUT today they didn't drop further behind. His swollen legs and ankles have also gone down as he dropped 16 pounds from Monday to Friday. :) Even though he is still frustrated by having a catheter in his chest and feeling like he has less muscle tone than his mother, we feel cautiously optimistic as we see some things returning to "normal".

Austin will meet with his doctor (who has been on vacation this week) on Monday morning to get his perspective on where we go from here. Austin is so ready to go back to work and just be normal so it's hard to be patient. Thank you for your many encouraging words and prayers. We continue to pray for complete healing and trust that God knows exactly what Austin needs.

August 4th/ P.M. Post

Hey Everyone, this is Austin, I wanted to personally thank you for all your prayers and support on my journey the past couple of weeks. I have been truly blessed to have had a support network like all of you. Today I had my 2nd day of outpatient care, getting my 14th plasmapheresis treatment. Yeah I know that seems like a lot, just to put it into perspective. Here is how one treatment breaks down, the first time I had a treatment I got around 17 bags of new plasma, it took around 2 and a half to 3 hours. As my treatments have continued the number of bags of plasma that I have needed have went down from 17, today I received 14 bags of plasma. So if I received around 14 bags of plasma each time, I have received approximately 196 bags, more likely it is closer to somewhere like 215. I heard about plasma donations before I got ill but now I am not only thankful for people who donate plasma I owe my life to people who do it. I do not think I will be able to donate plasma due to my illness but if I can donate blood I will and will certainly encourage others to do both because of the number of lives that can be saved through such a seemingly simple procedure, hey if you donate plasma, you can even make some money. Yesterday I went to my family doctor and got medicine for my stomach if I have cramps/unbearable pain, however I have not had to use it thankfully. My stomach has been doing ok since two days ago. Today I found out most of the things the doctors are looking at are doing pretty good. My hemoglobin remains around 8.2, which is still pretty low, making me rather tired pretty easily. My Magnesium is down as well even though I am on supplemental medicine. It appears as if my body is still struggling to produce enough red blood cells. I could use prayer for a positive attitude as my recovery continues. I also could use prayer to not worry about things I cannot control and to simply accept my reality as what it is and to not focus on what has went wrong or is going wrong. Prayer for my red blood cells and whatever is going on there would be appreciated as well.

Thanks again

Austin

August 2 Post - Outpatient Journey Continues

Long day at the hospital from 8am to 5pm. Blood test this morning revealed solid number for platelets and improved kidney functioning. Hemoglobin , magnesium, and LDH are still lagging. Austin's body is struggling to tolerate the ongoing plasmapheresis with a lot of fluid retention and generally feeling crappy.

Another point of discouragement is sudden onsets of extreme pain in his stomach which makes us fear that we still have a long way to go to heal the colonitis. Since he is now outpatient at Saint Joe we will need to redirect treatment for digestive issues back to our family doctor and Goshen Hospital. For Austin, it feels like being back at square one and it is very frustrating. The renal doctors at Saint Joe just keep saying that his body went through an extreme illness and it will just take time for everything to heal.

We feel the next two weeks will require much mental fortitude to fight through the treatment regimen when "feeling better" is still elusive. It seems the pheresis is doing it's job so our prayers now focus on the complete healing of Austin's digestive track.