Stem Cells

Well, this time it is me, Nathan Detweiler, who is writing the newest blog. This is the first time I have felt like writhing in a long time! I also have my mom helping me out, so it should be readable.

The most recent information is that all my tests have come back showing the doctors that my body is healthy enough to receive a bone marrow transplant. On Monday I found out that my bone marrow does not have any cancer cells in it, which is a very good thing! Additionally, my dad, mom, and I had an informal meeting about bone marrow transplants with a doctor friend. It really helped me and my family to develop a better understanding of what it will be like to go through this painful future. I am now feeling more confident about it than before.

I have also begun to take speech therapy, which is going well. It is mind baffling to me that I have to once again take my least favorite class in grade school: reading! How ironic is that? But, it is going well, and I am enjoying my slow progress of being able to read once again. Right now I can read children’s books for the most part and am enjoying it. As I am learning more about the brain, I am realizing how truly powerful it really is. An additional prayer concern for me is to increase the stem cells in my bone marrow so that my harvesting time can be shorter.

Nathan

More Tests & Treatments

Nathan had his third and probably last chemo injection into his spinal fluid today. Plans are now being made to move into the next phase of treatment. Nathan had several tests today to determine whether or not his lungs and heart were in good enough health to handle a bone marrow transplant. Everything checked out good. We are in the stage of treatment now that requires waiting and decision-making. The doctors are putting together the plan they think is best for Nathan and will then summit it to our insurance company for their approval. One of the surprises in this phase of Nathan’s treatment is how much the insurance company gets involved in determining a treatment plan, especially when bone marrow transplants are part of the treatment protocol. Nathan goes in tomorrow for a bone marrow biopsy to make sure his bone marrow is cancer free. The plan calls for harvesting Nathan’s own bone marrow so it can be used for his transplants when the time comes that it is needed. Pray that we may have patience during this time of waiting for a treatment plan to be finalized and accepted by insurance. Pray that we will be at peace about the treatment plan for Nathan (The proposed plan will be aggressive with lots of hospital time). Nathan’s reading is improving and his memory loss is not as severe. We rejoice with this. His work ethic and ability to focus is a real plus. Pray that these areas will continue to improve for Nathan (reading and memory). We continue to trust in God’s loving presence for Nathan’s healing and to give us the strength we need for the journey ahead. Thanks for your love, prayers and support.

Tim & Carol

Treatments Begin

Greetings,

Nathan continues to make good progress from his surgery. Short-term memory loss and reading continue to be Nathan’s biggest challenges although he is making good progress in these areas each day. Yesterday was the beginning of another long series of doctor and hospital visits and the start of chemo treatments for Nathan. Nathan had another brain MRI along with a full spinal column MRI yesterday to determine the extent of the cancer in the brain/spinal column area. The good news is that no other cancer was detected other than the tumor area that was removed. The other good news is that the doctors now have a treatment protocol to follow that has been used successfully with other patients with rhabdomyosarcoma tumors in the brain. The plan begins with chemo injections into the spinal fluid and is then followed with a series of chemo treatments given through IV that have a good track record of attacking cancer in the brain. Following these series of chemo treatments, the plan calls for radiation treatments to the tumor area. The protocol will be about an eight-month treatment plan. The chemo injections into the spinal fluid fortunately do not make Nathan as sick. We will try to keep you up-to-date on Nathan’s treatment as we go along. From our experience over the last nine months, we know a little more what to expect and perhaps what we need to do for our own self-care. However, there are always surprises and we know there will be some long days ahead as we move into this treatment plan. Pray for Nathan and us that we will have peace in the midst of the storm, that the cancer in Nathan’s body will eradicated and that Nathan’s body will be able to handle the aggressive chemo treatments that are coming up. Remember the doctors and nurses in your prayers also. They work with so much pain and brokenness every day. We have found Nathan’s medical caregivers to be persons of warmth and compassion along with being very skillful in what they do. Blessings to you all. God is present!

Tim & Carol

The Journey Continues

Greetings All,

Many of you have been wondering about where things are at with Nathan following the removal of his brain tumor last Thursday. We met with the radiologist and with Nathan’s oncologist this afternoon. Because of the nature of Nathan’s cancer and the location in the brain, the doctors are putting together a treatment plan that will be rather aggressive. It will likely involve another 8 more months of treatment including an aggressive chemo treatment, radiation and bone marrow transplant. The chemo with this plan will require Nathan to be hospitalized more often (approx. 5 days every 4 weeks). Nathan will also begin occupational and speech therapy to help with the short-term memory loss and reading challenges caused from this surgery. The next eight months will likely be a long and difficult journey for Nathan and for us. We are so very grateful for the progress Nathan continues to make each day. We believe that with time, therapy and especially with God’s help, Nathan will continue to make good progress in his recovery from surgery. When Nathan was diagnosed with rhabdomyosarcoma in Oct. ’04, I knew we were in for a long and difficult journey ahead. I did not know then how long and how difficult it would be. As we prepare ourselves to begin all over again with another aggressive treatment plan for Nathan, I still do not know how long and how difficult the journey ahead will be for Nathan and for us. However, I do know that we do not walk this journey alone. God walks this journey with us and will continue to give us the wisdom, strength and courage we need to face what lies ahead. God has also blessed us with a wonderful supportive family, church family and friends that extend around the world. We are so grateful to you all who hold Nathan and us up in your prayers. God bless you all,

Tim & Carol

Good To Have Nathan Home

Greetings,

Today was a very good day in that we were able to bring Nathan home from the hospital. Nathan was discharged this morning and we got home around noon. It was nice to relax around home this afternoon instead of being at the hospital. Nathan continues to make good progress from his surgery. We will be meeting with the radiologist on Thursday and also Nathan’s oncologist probably on Monday to talk through a treatment plan for Nathan. Nathan will also be receiving speech and occupational therapy to help with complications from his surgery. While we know that Nathan’s recovery and treatment plan will be ongoing for the time being, we rejoice and praise God for the progress he has made since last Thursday, the day of his surgery. Pray that Nathan’s strength will increase each day, and that God will give the doctors wisdom in putting together a treatment plan. Thanks for keeping us in your prayers.

Tim & Carol

Monday's Progress

Greetings,
This is Monday night and it is good to report that Nathan had a good day today. Nathan’s recovery from surgery is coming along really well. So well in fact that he will be able to come home tomorrow, (on Tuesday, 8/9). Today he was able to enter into conversation more with people, asking questions and contributing to the conversation. He was also smiling more which is always a good sign. Nathan still struggles with short-term memory loss and with reading. We trust this will improve with time and with therapy. His balance and walking is good. For these improvements, we rejoice. The pathology report from the brain tumor biopsy came back positive for rhabdomyosarcoma. We meet with the radiologist on Thursday to discuss Nathan’s treatment plan, which will likely consist of radiation and chemo. Pray that we may know God's wisdom in all of the decissions that lie ahead. Thanks for keeping Nathan, us, and the doctors in your prayers. We continue to trust in God’s healing presence for Nathan’s healing. Your ongoing support is an encouragement to us and to Nathan. Thanks

Tim & Carol

Seeing Progress

Greetings,

Just to give an update on Nathan – Sunday PM. We are thankful for the bits of progress we see each day. Today more tubes and cords were taken off and out of Nathan which he was glad about. He even walked to the bathroom with Tim’s help. This afternoon he was awake more and participated in a conversation with a couple visitors with a few sentences. Usually he has just one-word responses to questions. He is still trying to sort out lots of things, like where he is at and what has happened. He did remember this afternoon that he was camp pastor at Crooked Creek Christian Camp for 5th/6th graders this summer. I prayed for a smile from him today and was excited to see a small one as we were ready to leave this evening. Thanks for your caring and continued prayers.

Carol & Tim

Saturday AM Update

Greetings All,
Nathan seems to have had a good night last night and is resting well. His vital signs are good and he is off all the IVs and oxygen. His progress is good enough to move him out of SICU and will be transfered to one of the nursing floors early afternoon. For this we praise God. Carol and I are still feeling rather numb and emotionally exhausted from the past two days. Our concerns are focused on the long term effects Nathan's surgery may have on his mental/emotional status. Keep us in your prayers that we may have strength to face the days ahead and peace knowing that Nathan is in deed in God's healing hands. Pray that Nathan will continue to recover from his surgery and that he will be able to recover without undo complications to the brain. The plan for now is for Nathan to begin radiation treatment on Thursday, 8/11. However, we are still waiting for the pathology report to come back. Thanks for your prayers. God's peace be with you all and with Nathan and us.

Tim and Carol

Friday Morning Update

Greetings all,
We are thankful to report that Nathan continues to make good progress from his emergency surgery yesterday to remove a tumor in his brain. He will be in the Surgical Intensive Care Unit throughout the day and night, however, they have already been able to remove him from the respirator and he is drinking fluids and responding to commands. His motor skills seem to be functioning and he is able to make verbal responses. For this we are so deeply grateful and thankful to God for his mercy and loving presence, and we are so thankful to have such a supportive group of caring, loving and praying group of family and friends. Thanks for your love, support and prayers!! We met with the neurosurgeon this morning. While Nathan's surgery yestrday was necessary lifesaving surgery, it was also a setback in terms of Nathan needing to go through two surgerys in one day and in terms of when they will be able to start radiation and chemo treatment to the brain. As was explained to us, if nothing is done from this point on, the tumor will start growing again. There are normally microscopic cells present that could start growing. We ask that you pray for Nathan in the following ways: 1) That Nathan will continue to recover well from his surgery; 2) That no infection will set in; 3) That the damage to the brain area during the removal of the tumor will not have severe side effects for Nathan; 4) That the doctors will know what the best kind of treatment plan is needed for Nathan. Thanks!

Tim & Carol

Tumor Removed

What a day we have had. Following Nathan's biopsy today, he had significant bleeding which resulted in Nathan needing to go in for a second surgery to remove the blood clot and stop the bleeding. When the surgeons opened the top of Nathan's head they discovered a tumor the size of the surgeons fist which they were able to remove. The surgeon described this as a life saving surgery!!!! At the present Nathan is in the SCIU. Please continue to remeber Nathan in your prayers and pray that there will be no infection or other complications. Thank you so much for your prayers. We will keep you posted.
Tim and Carol

Update on Nathan

Just a quick update to let you know Nathan came through surgery ok and the doctor was able to get a biopsy sample of the tumor in Nathan's brain. Now we wait for the pathology report which we hope to have in the next day or two. Some specific prayer requests are:
•That the biopsy does not cause hemorrhaging in the brain.
•That the pain caused by swelling and hemorrhaging would subside.
We will keep you posted concerning the pathology report, treatment plan and on Nathan’s progress. Thank you for your prayers.

Nathan is hospitalized once again

Greetings,
Since Nathan’s last entry, there have been some significant changes. On Tuesday morning, 8/2, we took Nathan to the cancer clinic because he was experiencing severe headaches. His doctor ordered another MRI of the brain which revealed that the mass (tumor) in Nathan’s brain had grown significantly from the MRI taken on Monday, 7/25. The neurosurgeons who reviewed the comparison of Nathan’s MRIs and Nathan’s doctor said a biopsy was necessary ASAP to determine the nature of the tumor, whether or not it was cancerous, and thus determining what treatment needed to get rid of the tumor. The biopsy is scheduled for Thursday morning of this week. However, if the tumor continues to grow as rapidly as it has, Nathan may need emergency surgery to relieve the pressure in the brain and for them to remove as much of the tumor as possible. A biopsy would then be taken from the part that is removed. Nathan is in the hospital so they can monitor things closely and for pain control. We ask that you remember Nathan in your prayers, along with the neurosurgeons as they take a biopsy of the tumor growing in Nathan’s brain. The risks seem higher when the doctors start talking about brain surgery. Our prayer is that if Nathan does need surgery to the brain area that God will guide the surgeon’s hands to remove only what is needed without causing damage to the brain. We know that Nathan is in God’s hands and that God is in control of Nathan’s ongoing healing. We find comfort in this trust and are confident that whatever the outcome, God is present with Nathan, us, and the doctors. Thanks for your ongoing prayer support.
Tim & Carol Detweiler

Nothing New

I had another visit today and didn’t find out anything new. I am getting over my headaches from the spinal tap but they still haven’t found anything wrong with my brain fluid. Which is good because it leaves open the possibilities, but it also means more tests. I will be meeting with a brain surgeon sometime soon and will be having another MRI this coming Monday (8/8). I am becoming impatient with the whole process, but better safe than sorry. I am not sure what else to write right now as I await finding out whether the mysterious mass in my left frontal lobe is cancerous, and infection, or simply a random seizure. I am praying for something that is not serious to my health. I would appreciate your prayers as well.

With as much peace as I have,
Nathan