White Cells Count at 1.1

The first thing I heard in the morning was a whisper from my nurse that my white cells were all the way from .3 to 1.1. It is a huge jump for me! The doctors are telling me that I am making great progress on my recovery from the heavy dose of chemo. One thing I can use more prayer for is improvement in my ability to eat food. Right now I am stuck to IV nutrition and yogurt.

With more energy,
Nathan

Nathan Keeps making progress

Today, I think Nathan would say he is feeling stronger. He continues to have throat and stomach pain but his mouth feels better. He ate yogurt and a few bites of a pancake and chocolate pudding. He had a CT scan of the chest and head to check out the status of the lung fungus. The scans looked good – the fungus area may be slightly smaller. His white count stayed at 0.3 today and he received blood and platelets again. One of the nurses said once his white count hits 1.0 then they start thinking about him going home. Nathan went for a little walk around 9 PM. He was going to write something on this blog but is too tired so I will just post this update on Nathan’s day.

Carol

God's Healing Rain

This is Sunday morning. Today was my turn to be with Nathan on Sunday morning. We had our own little worship service in his room. No, I didn’t preach a sermon. We read from Colossians 1:9-21 and Psalm 34:1-8 and then watched the “Healing Rain” CD by Michael W. Smith. The rain we had last night reminded me of God’s healing rain. Some of the lyrics are especially meaningful to us during this time of Nathan’s treatment. “Healing rain, it comes with fire, so let it fall, and take us higher, healing rain, I’m not afraid, to be washed, in heaven’s rain, lift your heads, let us return, to the mercy seat, where time began, and in your eyes, I see the pain, come soak this dry heart, with healing rain, and only you, the Son of Man, can take a leper, and let him stand, so lift your hands, they can be held, by someone greater, the Great I Am, healing rain, it comes with fire, so let it fall, and take us higher, healing rain I’m not afraid, to be washed in heaven’s rain, to be washed in heaven’s rain, healing rain, is falling down, healing rain, is falling down, I’m not afraid, I’m not afraid.” I am coming to see healing as being much bigger than “cure”. Healing may or may not include cure. We pray for Nathan’s cure. However, one thing we know is that God’s healing rain comes down upon us to soak our dryness, to heal our brokenness, to quiet our fears, to heal our pain, to surround us with God’s love and care, and to give us peace. We are also surrounded by the love and care of many people. We rejoice this morning that Nathan’s white blood cell count has climbed to 0.3. H still is running a fever which is expected with his counts so low. He was going to add to the blog but he was too tired and decided to lay down and sleep instead. Perhaps he will feel like writing something later. Thanks for your continued prayers and may you know God’s healing rain falling down upon you today.

Tim

White Cells Begin to Climb

Early this morning my nurse leaned down to tell me that my white blood cells had grown for the first time since receiving my stem cells. I have also been maintaining a more of a stable fever. While it isn’t good to have a fever it is better to have a low grade one rather than a high one. Starting yesterday, I have begun the process off feeling better.

Thanks for your prayers,
Nathan

PS: It is so good to see Nathan’s white blood count begin to rise. It is at 0.2 today, the first sign that the bone marrow is beginning to make good cells once again. This is important for Nathan’s healing of the sores in his mouth, throat and stomach. Nathan also ate yogurt last night, the first time he ate anything for five days. He also ate yogurt for breakfast this morning. These are all positive signs that Nathan’s body is beginning to heal following his chemotherapy. The sun is shinning bright in our window this morning, reminding us of God’s love that surrounds us here in the hospital.

Tim

Keeping on Waiting

Today is day seven since Nathan’s stem cell transplant. There is really nothing new to report. A positive sign is that Nathan’s fever didn’t spike during the night as it had the past several nights. He continues to have a low grade fever along with the other symptoms he has experienced for the past week. We are hoping that by Sunday or Monday we will see the white counts start coming back up. It takes about 10 to 12 days before the bone marrow starts making white blood cells following a transplant. The only thing we can do is wait and ride through this time the best we can. The biggest change today is that Nathan was moved to another room for the day. They had to turn the water off in Nathan’s room so they could fix a drain problem in the room below his. We should be back in his room by late afternoon. I have no further updates to add at this point. Thanks for your ongoing prayers.

Tim

A Day on the Bone Marrow Unit

A day in Nathan’s life on the bone marrow unit: Nights are always interrupted (important interruptions) with taking vitals, and keeping his antibiotics, pain meds and IV fluids flowing. The doctor makes her rounds around 9AM. Things are pretty much the same for Nathan this morning – pain in the GI track and stomach, fever, and low energy. There are no new developments that are cause for concern which is good. By 10AM we read through Nathan’s emails and then it is time for another nap. Around 1:30 we opened and read the cards that came in the mail. This afternoon several persons stopped in for brief visits. Nathan opened one of his gifts from the “sunshine” box – a video with Will Ferrell and Robert Duvall “Kicking & Screaming”. The floor doctor makes her rounds around 3:30 PM – she feels Nathan is doing well, the symptoms he is experiencing are normal and to be expected. He was given more pain meds, antibiotics, nutritional fluids and blood platelets. Around 5 PM we went for a little walk up and down the bone marrow unit hall. Nathan takes a lot of short little naps through out the day. Last evening Carol and Nathan put together a puzzle. Some time during the day we work in a movie on the DVD if he feels up to it – yesterday we watched “Lilies of the Fields” with Sidney Poitier. By 9:30 PM, Nathan is usually ready to go to sleep for the night. Carol and I spend our time reading, keeping up on Nathan’s care needs, doing cross-word puzzles and taking naps ourselves. It is also good opportunity to check our own email. That is pretty much our day. We don’t see it as a boring place to be. Instead, we see it as the place we need to be at this time in Nathan’s treatment plan – a place of care and compassion. It’s difficult to patiently wait for Nathan’s bone marrow to kick in and start making good blood cells again to wait for Nathan’s body to heal and become strong again. But we know Nathan is being held in God’s loving arms. Thanks for your ongoing prayers and concern. We may not get a daily update written but will try to keep you posted frequently on Nathan’s progress.

Tim & Carol

Monday update

Hello from Nathan and family on 1/23/06. Just a quick update – the doctor reported that Nathan’s blood cultures showed a bacteria so he has been started on a high powered antibiotic. She thinks that is what is causing the fever. This evening, he’s had only a low grade fever which is an improvement from yesterday. Nathan also had a scan of his chest and head today. We were thankful to hear that the fungus in the lung has stayed about the same size – it could have increased in size since his white count is very low. He continues on morphine and I.V. nutrition due to his sore mouth, esophagus, and stomach. That probably won’t heal until his stem cells start producing blood cells. The present he opened today from his sunshine box, was a puzzle. He and mom put it together.  So, thanks for your continued prayers for strength and healing. Tim and Carol

Sleepy Sunday Update

Hello again, Today Nathan is very sleepy – he talks a few minutes and then drifts off to sleep. The doctor attributes that to the morphine. Nathan started running a 101 degree temp in the night. So, he has had and will have a variety of tests to see if the cause can be determined. Thank you so much for all your prayers. Pray nothing life threatening will develop and whatever is causing the fever can be controlled. The doctor said they might give Nathan white blood cells tomorrow and will do a scan of his chest to see how the fungal area looks in the lung. This next week will probably be when Nathan feels the worst. We have been carried by your prayers. Tim and Carol

Post Stem Cell Transplant

You may be wondering how Nathan is doing. There’s not much new to report. He handled receiving his stem cell transplant well. The roughest thing the last couple days has been pain from his throat to his stomach. He’s taking morphine for that pain. So, you can pray for the lining of his gastrointestinal system to heal quickly. He also receives I.V. nutrition but can eat anything by mouth that he can tolerate. Mainly he eats yogurt, a milk shake, or tapioca pudding. He continues to walk in the hall about 15 minutes each day and takes frequent naps. His blood counts are checked each day – today he received platelets to prevent bleeding. They are giving him antibiotics and anti-viral meds to prevent illnesses. Cards, gifts, and his computer helps pass some time – e-mails, music, and watching DVDs.

Tim and Carol

Stem Cell Transplant

Today is the day that I will be receiving my stem cells back into my body. I have heard from a few of the nurses that today at 2pm will be an important recovery date; a recovery back to health once again. I found out today that I will be actually receiving two stem cell transplants, which means I will be receiving a second round of stem cells tomorrow morning. I am excited about the re-growth of my body and ask you to pray for a quick and healthy re-growth.

Love,
Nathan

PS: I want to add a ps to Nathan's blog to let you know that his stem cell transplant went well today. As Nathan mentioned above, he will get the second half tomorrow. The Transplant Unit refers to this day as Nathan's second birthday since the stem cells are meant to give him life again. We told Nathan that this is actually his third birthday, his baptism being his second one. He agreed. The room smells like creamed corn from the preservative that is put into the stem cells before they were frozen. Nathan's body emits this smell. Thank you all for your many prayers. We now wait for the bone marrow to begin making new cells. Twelve days is the record of recovery here on the unit. It takes about two weeks for the bone marrow to kick in. We see the stem cells as the opportunity for new life to be given to Nathan's body. Pray with us toward this end.

Tim and Carol

Chemo is Finished

Greetings from Nathan’s hospital room in the bone marrow transplant unit. Today is day nine which means the eight days of high dose chemo are over (yeah!). Today and tomorrow are (much needed) rest days for Nathan as he has been hit pretty hard with the chemo. His white blood cell count is at 0.3. The staff here is really good at staying on top of Nathan’s pain and nausea control due to chemo. So far he has continued to have a decent appetite and is able to keep his food down. He is pretty exhausted and sleeps a lot, however, yesterday Nathan and Carol put together a small puzzle and went for a 15 minute walk. We did some decorating in Nathan’s room – his bulletin board is full with pictures of grandparents, family and friends and we found a way to hang this prayer quilt on the wall beside his bed. It adds a warm and caring touch to the room. The nurses and staff marvel at the love and care from so many people that went into making this quilt. Again we are reminded by this quilt of all the prayers that surround Nathan and our family during this difficult time. Thank you!! Washington Mennonite Church put together a “sunshine” box for Nathan. So he has a small gift to open each day to be reminded of the love and care from our church family in Washington. We are truly blessed by the love and care from family, church and friends that surround and hold us up at this time. The doctors say everything is going as scheduled and looks good. The doctors, nurses and staff on the unit here are great. Continue to remember them in your prayers. Continue to pray that the chemo will destroy all the little microscopic cancer cells that linger in Nathan’s body and that his organs will not be damaged by the high doses of chemo he has received. Pray that Nathan will have the strength he needs for each day and that he will not get any life threatening illness during this time when his white cell count is so low. Thursday is stem cell transplant day. This is really a simple procedure of receiving his own stem cells back through IV. However, it is a big day in that it marks the day from which we wait for Nathan’s bone marrow to begin making white blood cells, platelets, hemoglobin and all the other necessary blood cells we need for survival. May the love and peace of God surround you this day as we are also held in God’s love here in the hospital. Thanks for your prayers.

Tim Detweiler

In the Bone Marrow Unit

Greetings,
I am writing to let you know that Nathan is now in the Blood and Marrow Transplant Unit at UIHC. He was admitted on Monday. His treatment begins with eight days of aggressive chemotherapy and then his stem cell transplant. We were told to expect about a four week stay. The chemo will destroy the bone marrow and the stem cells will hopefully rejuvenate it following the eight days of chemo. So far Nathan is receiving the chemo as well as can be expected. His sickest days will come the weeks after chemo. The biggest side effect he is experiencing now is some nausea and tiredness. The chemo he is receiving now requires that he showers four times a day. The body excretes it through the skin and it is important to keep it washed off. He is able to get out and walk up and down the hall here in the unit, which he tries to do twice a day. During the chemo phase of Nathan’s treatment, Carol and I are taking turns staying up over night with Nathan. Prayer Requests: Pray that the chemo will destroy all the cancer that lingers in Nathan’s body and that Nathan’s body organs will be protected and not damaged by the chemo. Pray for protection from life threatening illnesses during this time. Pray that Nathan will have the strength he needs for each day. Pray for the doctors/nurses/staff that work here on the bone marrow unit. Pray for Carol and I as we journey with Nathan during this time (also remember Caleb & Erika). Erika started school at Eastern Mennonite University in January. Jane Davis gave us some chalk that was blessed for use during Epiphany. We wrote a blessing with this chalk above Nathan’s hospital room door – “Peace be with this house (room) and all who live (and enter) here. Blessed be the name of the Lord.” We wish you God’s peace and blessing in your household as well. Thank you for your prayers and supportive care.

Tim & Carol

PET Scan

PET Scan

I spent all day yesterday in the hospital once again, but this time it was for tests before I go into the hospital for my last scheduled chemotherapy treatment. The first thing I did was to receive a pet scan of my whole body. This test was to see if there were any remaining cancer cells still growing. Fortunately they did not find any active/growing cancer cells anywhere in my body. That is a very good thing because the fewer cancer cells that I have is the best for starting the new chemo. But, the doctors did discover a fungus growing on the backside of my right lung. This is a fungus that is dangerous when someone does not have a strong immune system. That will be my case in a little over a week away as I am starting with the new chemo on Monday the 9th. They have begun by fighting the fungus with antifungal medication and everything should work out well, but this does increase the risks for problems during the treatment. I also received an EKG.

As I think about my month long stay in the hospital starting just next week, there are a lot of prayers that enter my mind. I am hoping that staying in the hospital for a long time won’t be too bad, and I hope I can remain as healthy as possible the whole time through. I also am praying for protection for my body organs against the strong chemotherapies, from life threatening illness, and low blood counts. And ultimately, I am praying for complete healing from rhabdomyosarcoma.

With love,
Nathan