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Sunday, January 15, 2006 1:16 AM CST
January 14, 2006 Day +362 (ALMOST ONE YEAR!!)
“Waiting”
The title of tonight’s update is waiting, not because we are LONG overdue updating Daniel’s website, but more of a reflection on the season we are in……both spiritually and medically.
I could not help, but contemplate our last year as we moved through the Christmas season. Several times during advent, we heard stories, scriptures, and sermons about waiting. Waiting is a big part of all of our lives. In this day and age, it is something that most of us don’t particularly treasure. The commercial side of the season results in people waiting in traffic, waiting in lines, waiting for assistance, and waiting for those much anticipated gifts. For Larry and I, it meant waiting for the FedEx or UPS truck to arrive with those presents ordered on line. (a method of shopping I’ve found much more tolerable :) At our one year visit last week, it meant hours of waiting for appointments.
We have found that we have learned a great deal about waiting this year. It is interesting how the very act of waiting can result in a multitude of emotions. Frustration , fear, acceptance, resignation, relief, peace and joy, to name a few, can all be experienced when waiting. I suspect that many of our web updates have been associated with times when we were waiting and more recently the waiting has to some extent delayed the updates. Many people are surprised when they ask about Daniel and things aren’t “over.” More than once I’ve had people say that they thought we were done with the transplant and the unspoken part seems to be…….and life has returned to normal. So, when I think of updating the site it is almost difficult to share that we are still “waiting.”
At our last update, Daniel’s bone marrow mix was still somewhat variable. They were contemplating beginning the process of weaning his cyclosporine. Unfortunately, his RFLP began a rather rapid decline and once again we were waiting in a mode of fear more than joy. Dr. Orchard made the decision to rapidly wean his cyclosporine over a 4 week period, rather than the usual 8 to 12. The risk of graft vs. host disease was a bit higher, but at that point we had nothing to lose. His bone marrow was at risk, so we began the process. Daniel was rather thrilled by the prospect of taking fewer pills each day. Initially, I was pretty concerned about the possibility, but very quickly it started to feel right. In some ways this is what we had been waiting for…………why worry now.
Two weeks into the wean, his bone marrow began to look up. The % of donor marrow increased to 70% and he was without signs of problems. The results of his second test, drawn 3 days after the wean was complete, returned at 80% donor marrow. As of Tuesday the 3rd, he was still at 70% donor. Another RFLP was drawn at our one year visit on the 9th and as you might guess………………we are again waiting. We will continue to check RFLP’s and wait over the next month or so, before they make any further decisions on his ongoing medications. Dr. Orchard did feel a bit more comfortable that his marrow was not dropping off after removal of the cyclosporine.
Daniel continues to have a few issues. Primarily he continues to be anemic. He is receiving meds weekly to try and stimulate his red blood cell growth. Christmas week he required a transfusion, which was a bit of a surprise since he had not been transfused since September. He also continues on IV nutrition ……..one of his favorite responses is
“DON’T SAY EAT!!!!” We also have found his vision has deteriorated and his visual field is now a very narrow 5 degrees. It is clear that he struggles a bit more visually now.
He seems to have developed a “neglect” of his right side, which essentially means he can use that side, but forgets that it is there. His neurologist has recommended a change in therapy to try and increase the use of his right side. We will have to ………wait……to see the impact.
So, why all this waiting? I wish I could answer that, but unfortunately, more often than not I tend to want to push things along and get to the end. On the other hand, I also realize that for Daniel if there were an end it would likely not be desirable. Only God can create the purpose in all that we are experiencing and so we must wait for His direction.
The Oncologist I work with, Dr. Ghosh, has often stated that all of life is a spiritual journey and what he does as a physician is essentially the tool(s) he has been given as he moves along this journey. Even though we come from very different religious backgrounds, it is interesting that our spiritual journeys often cross. I too, believe we are on a spiritual journey. One in which we are called to pursue spiritual growth.
Isaiah 41: 28-31 says:
Have you never heard or understood? Don’t you know that the Lord is the everlasting God, the Creator of all the earth? He never grows faint or weary. No one can measure the depths of His understanding. He gives power to those who are tired and worn out; He offers strength to the weak. Even youths will become exhausted, and young men will give up. But, those who wait on the Lord will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.
So, as with all other parts of our lives, our waiting is what we need to do now……medically and spiritually. God knows what is happening and has a plan that is yet to be revealed. Our job is to continue to maintain a patient faith in God and trust that His work is occurring as we wait.
We know that we are not the only ones that suffer adversity. The reality is that no one gets through life without their fair share of bumps and bruises. Our prayer for all who are suffering or struggling, regardless of where they are in our world, is that they will experience spiritual growth and renewed strength as they wait upon the Lord.
Thank you for still visiting our site and keeping Daniel in your prayers. We believe that your prayers have resulted in Daniel’s survival and our ability to continue to preserver.
Thank you
Sylvia, Larry, Thomas, Daniel, and Jen
Monday, November 7, 2005 9:39 PM CST
November 7, 2005 Day +293
We are pretty amazed at how quickly time seems to be flying by this year. Once again the seasons are rapidly changing before our eyes. Three weeks ago our trip to Minnesota was an opportunity to see the trees ablaze with color. Today, they were void of color…..
and leaves, as far as that goes. It is not difficult to remember the emotions of last year on our first trip to Minnesota. I think we felt as empty and bleak as the world around us appeared. This year the changes in seasons mean that we have been blessed with additional time and hope. I guess our perspective can change as rapidly as the seasons.
Our last two trips have been “rapid” turn around trips. In an effort to avoid packing (which I feel is akin to moving), we have tried driving up and back in the same day. We figure it has several benefits, cost savings (motels and food), less packing stress, time savings due to the decreased packing, there is always the dog to consider (if we remember she needs to be watched), and we get to stay in our own beds every night. The down side is we get up at 3:30am to hit the road by 4:30 am and on the back side we are drained. If benefit vs. toll boil down to number of points, we apparently are ahead to do it this way…………………maybe ask how we feel in the morning.
Daniel’s visit went well. He is back up to 61 pounds, which is a 6 pound weight gain since restarting TPN. Last week he was teetering on the possibility of needing an additional blood transfusion, but he pulled ahead today with a Hgb of 9.1, so that is back on hold. Another RFLP was drawn today and if the results are stable or improved, they will begin weaning his cyclosporine (an 8 to 12 week process). If his bone marrow mix has declined, they will probably try a boost from Thomas before weaning. We believe that he looks great and is feeling better, so we are very hopeful that the results will be good. We expect them to return early next week.
Nothing else should change in the next few days to week, assuming we keep him away from the winter bugs that seem to be popping up. We will keep you posted on his progress. Last night at the meeting with our small group from church, the comment was made that it interesting that we are far more likely to remember the bad things that happen, than we are to remember the good. I’ve pondered that off and on today. I decided that maybe we need to remember the bad, so we can enjoy the good when it is here. So, it may not be a matter of remembering, as much as the process of experiencing.
Thank you for your continued prayers. Please keep all our other bone marrow buddies in your prayers.
Sylvia, Larry, Thomas, and Daniel
Tuesday, October 25, 2005 10:04 PM CDT
Oct 23, 2005 Day + 278
“ In three words I can sum up everything I’ve learned about life: it goes on.”
Robert Frost
We returned from yet another visit to Minneapolis and the quote above best sums up our visit. Daniel’s visit was pretty straight forward. On the TPN (IV nutrition) his counts have stabilized, his mouth is less sore (although his gums are still competing with his teeth), his kidney function is getting better, his weight has gone up about 6 pounds, and all the other varies drug levels they draw regularly seem to be stable. We will receive the results of this visit RFLP (bone marrow test) this week sometime. They also drew a variety of other tests to check in on his immune system, which we assume will also return this week.
We did not get any firm answers on when they will begin weaning his drugs. We got the impression that Dr. Orchard may be waiting to see if we can get to 100% Thomas, given enough time. He usually says “at some point we are going to have to fish or cut bait,” but then he hasn’t given us any indication of a date for our “vacation.”
Daniel had a nasty fall last Sunday. As a family, we need to be retrained to be aware of the struggles of someone who is visually impaired. He fell over a pair of shoes by the back door. We have trained everyone to take their shoes off when they come in, but they don’t have a specific designated place. Unfortunately, Daniel tripped and fell over the shoes. He apparently hit a chair, which knocked the wind out of him. He now has some residual pain, which clearly is distressing to him. He generally doesn’t complain and now he does intermittently.
On Tuesday, Daniel spiked a temperature of 102 axillary (103 if it was oral), in the middle of the night. The next morning we checked his counts and he had evidence of a bacterial infection brewing somewhere. We cultured everything possible and got a chest x-ray, but nothing turned up. Fortunately, he improved significantly after a couple of days of IV antibiotics. Tuesday and Wednesday he was up all night, Thursday he was up about half the night. We now have a new perspective on our usual nightly interruptions and are thankful for the sleep we do get.
In between all the care needs for Daniel we continue to try and keep going through the daily challenges of life. Each day comes and goes. Some days we are just happy to get to the other side and others we are able to enjoy a bit more. Sometimes it is hard to remember that each day, no matter how busy or stressful, is really a gift. I believe a cognitive / behavioral therapist would suggest that I retrain my brain to think about the gifts and not the stress. So maybe I need to have a new mantra:
Remember to treasure the gift of today and the unique moments it brings.
Sylvia, Larry, Thomas, Daniel and Jen
Wednesday, September 28, 2005 10:07 PM CDT
September 27, 2005 Day + 253
Hi to all our friends,
Just a quick note to update you on our latest news.
Daniel’s RFLP that was drawn at our last visit on the 15th returned at 86% on the M fraction and 83% on the N fraction. Dr. Orchard was apparently pleased with those results, but as of yet we don’t get to wean off the immunosuppressive meds. Our
next visit will be either Oct. 10th or 17th, depending upon the openings in Dr. Orchard’s schedule. Another RFLP will be drawn and plans will be made from that point.
He does seem to be doing better on the TPN, even though we notice that we are all a little more sleep deprived. What we notice most is that he is working better with his tutors and his mood improved dramatically. I guess he is no different than the rest of us when we are hungry. His renal function and other labs have seemed to slowly improve as well. We may even be able to squeak by with a few extra days between transfusions. His gums continue to overtake his teeth. He now has only a very small portion of his front teeth remaining visible, but with improved compliance with mouth care, he at least does not seem to be quite as painful.
Today we did find out that Daniel will probably not make it back to school in January as we originally planned. We are hoping that he might make it after Spring break. In some ways that might be good from a “bug” standpoint. Flu and cold season will be winding down. We will have a few new challenges, since Suzanne our sitter, will need to return to school in January. (We are not ruling out bribing her to stay).
Thomas and Jen both seem to be doing very well in school. The school year seems to be speeding up. I’m not real happy about that…………Thomas will be in high school next year (and is already trying to talk us into his permit, AHHH!!!) Jen has “gone Greek” which seems to have really gotten her involved in many great activities at Drake. Hopefully, she doesn’t get too worn down.
Thank you for all your continued prayers. We know God is listening and is remaining near. Please pray for all our other bone marrow friends, as well.
Sylvia, Larry, Thomas, Daniel, and Jen
Saturday, September 17, 2005 11:54 PM CDT
September 17, 2005 DAY + 243
We have not updated for over a month, but the time seems much shorter. Our last few visits to Minnesota have been somewhat unnerving and have opened our eyes to the challenges of the future. It seems that we are not near the end, but only at the beginning. We are thankful for the opportunity, but somewhat overwhelmed at times by the tasks at hand.
If you have continued to follow Daniel’s progress, you probably remember that the doctors were exploring ways to improve his marrow mix. For five months he had remained at a solid 62% donor (38% self) marrow mix. Dr. Orchard and Charnus were concerned and hesitant to wean his Cyclosporin and CellCept for fear that he would lose his bone marrow graft and that the ALD would reactivate. In addition, we found that he is functionally and legally blind. His acuity is 20/150, but his visual fields are very narrow. His peripheral fields measure at 8 to 12 degrees. (Normal is 130 degrees.) He sees the world through a blurry straw and because his visual loss is “cortical,” he often is unable to interpret what he sees at all. In our home environment, he does pretty well. If we are away from home, he can even lose track of familiar objects (such as mom) if they are within a few feet of him.
In the last two weeks, he has developed mouth discomfort as a result of gum overgrowth. The Cyclosporin is causing his gums to become full enough that they are fuller than his teeth in some areas. It appears that as a result of the combination of big gums and baby teeth, that he has returned to a stage of constant “teething.” Eating is difficult, if not impossible and he began loosing weight. In the last two weeks he seemed to be using his right side less and ultimately this week he stopped all together, unless he was reminded that it was still there. The combination of his mouth pain and right sided weakness sent us SCREAMING back to Minneapolis.
Despite our anxiety, there is very good news. He had another MRI, which revealed that his ALD continues to be arrested and he has not had any progression. In a very surprising turn of events that can only be explained by God, Daniel’s marrow mix has taken a jump in the right direction. His RFLP from a month ago showed that he was a HUGE 87.7 % donor cells. Another RFLP was drawn Thursday. They believe that his right sided weakness is probably something that has been there even pre-transplant, but he was better able to compensate when he was not starving. Now that he is nutritionally deprived (we know that in the last 2 weeks he struggled to get in 500 cals a day), he probably doesn’t have the strength to overcome his deficits. Tonight, he restarted TPN (IV nutrition) through his Hickman.
In addition to his ongoing medical needs (back up to 30+ pills a day, transfusions, dressing changes, mouth care, lab draws, etc), we have been working with the school and the area education agency to develop an educational plan. The world of educational planning, visual loss, and special needs is new for both Larry and I, so we have been on a learning curve of a different kind. We have attended workshops to learn more about services and equipment available to the visually impaired. We have researched the law, so we better understand what services are made available to him through the schools and what we need to provide. We have met his new tutor, the vision teacher, and the orientation and mobility specialist. We have had meetings to plan for his education now, since he can not go to school until they stop the Cyclosporin and Cellcept, and in the future when he does return to school. In addition, we are going to Iowa City once a week to meet with a neuropsychologist who specializes in children with brain injuries. His role is to help Daniel cope with the MANY changes and losses he is experiencing. (We will spare you any details related to the ongoing and new insurance issues we’ve encountered. That in itself is going to be a full time job).
As you can imagine, there is rarely a dull moment. We feel blessed that:
1. Daniel’s ALD is still arrested and it appears his bone marrow situation is improving.
2. That his tutor, Stephanie, All Saints school, and Grant Wood AEA have been working diligently to ensure Daniel has the services he needs to be successful even with his impairments.
3. The other children, Jennifer and Thomas, seem to have settled into the new year and are doing well despite the disruptions at home.
4. We live in an area that is safe and dry. I’m sure that somewhere in the South there were families facing situations like ours, but now are also homeless. We pray for their survival.
We do need continued prayers for:
1. Daniel’s RFLP results to continue to show a marrow mix that is primarily donor (if not 100% donor).
2. Daniel to be able to be weaned off the meds that are causing him trouble, specifically the Cyclosporin.
3. The return of his right sided function as he regains strength.
4. Stamina for those of us caring for him.
5. Great learning strategies for the teachers and staff who are trying to figure out how to help him learn best.
All the other families out there who are in similar circumstances, particularly those in the South who may have lost even more.
Thank you for continuing to keep us in your prayers. We are VERY grateful.
Sylvia, Larry, Thomas, and Daniel
Wednesday, August 10, 2005 11:00 PM CDT
August 9, 2005 Day + 205
Wow!!! It’s been awhile since I counted the days since transplant. It is hard to believe that we have now crossed the 200 mark. We promised an update after we got Daniel’s bone marrow results (RFLP) and the plan from the physicians. What we found out is that
Daniel’s marrow is still about 65% donor (Thomas) and 35% his own. That means that the last 5 RFLP’s have been in the same range. There is a 5 % error rate, so given the overall average, he’s about 60/40. We have been waiting on the plan from the physicians, but have not heard any news. We know that there was discussion, but since Daniel’s position is a bit unusual we now think they will probably wait until his next visit August 22nd, to make any changes. So, for now we are thanking God for another day of stability and trying not to think too much about tomorrow.
I think we were initially quite shocked and distraught after last months visit, but we seem to be rebounding a bit. Larry has convinced me that things are what they are and it is our job to make the best of the situation. I think that was his gentle way of saying “get over it and get going!!” We also know that we have been on the receiving end of many prayers, which helps strengthen our resolve. We have been very busy the last two weeks looking for educational resources, making contacts with educators and other parents with children who have special needs. Knowledge is power and it is helpful to understand the ground rules and resources available. We have found some very good resources and have gotten tips from others on how to move through yet another world…………that of a child with special needs.
We still have a ways to go, but for now we will take each day as it comes. We continue to pray for God’s healing touch to relieve Daniel of his deficits, but we also know that in the mean time we need to continue to try to maximize his resources and the abilities that remain. I think I knew I’d turned the corned a bit in the last few days when instead of trying to figure out how to get Daniel’s bone marrow to 100% donor, I started to realize that God will give us what we need………….not necessarily what we want. So now rather than being anxious, I’m trusting that God has given Daniel just the right amount of marrow. Enough to stop the ALD, but not so much that he has other complications. If he needs more, the answers will be provided.
Please continue to be in prayer for all of our other transplant friends. We have heard from some, like Andy and Matthew, who are doing well. Others such as Roman, Titus, and Terrell continue to struggle. We also have met families (either through the web page or in person) of Shane and Marc who are currently in the midst of their transplants. We have been so thankful for all of the support and prayers we have received.
May God Bless all who visit here,
Sylvia, Larry, Daniel, Thomas, and Jen
Friday, July 22, 2005 9:39 PM CDT
July 22, 2005 Day +187
This is my second attempt at updating this page since our visits. The first attempt looked like a dissertation, so I decided to try again. We are home again today and maybe being in our own environment will help.
This was a very busy and long week. Daniel had many tests and physician visits. He did relatively well throughout, but was clearly not entirely interested in the whole process, bored at times, anxious at times, and sometimes just plain stubborn. By the end of the third day, I was reminding him regularly that we were NOT the enemy. Today, he seems much calmer and more comfortable (along with the rest of the family).
The good news is that he looks good physically. He has stopped loosing weight, his labs and vital signs were reasonable. He continues to drop his red blood cells, so we are going to try some Procrit (you’ve probably seen the ads) to try and stimulate the red blood cell growth. They are a little concerned about the number of transfusions he has required. Today we heard that his MRI continues to be unchanged and his adrenal function continues to be normal. Both of those were good to hear.
Daniel’s neurologist tells us that once we get to one year post transplant, the likelihood of the ALD returning drops a bit. We can not rest easy in this area until he is weaned off his meds and his bone marrow graft from Thomas remains as the predominant marrow. We learned that Daniel is only the fourth case of mixed marrow in ALD. In the other 3 cases, two had progression when they lost their graft and the other is apparently ok. So, Daniel’s marrow mix is the “wild card” in his care. We are waiting for the RFLP that was drawn Monday. We had a long discussion with his transplant doctor to see if there were other ways to push Thomas’s marrow percentage a little higher. We really did not come away with any answers, but Dr. Orchard will be doing some research on options as we wait for the RFLP results.
We underwent a bit of an emotional transition this visit as well. We learned that Daniel is essentially, functionally blind. It is as if he were seeing the world through one straw. He sees bits of a picture and has to get enough information to create the whole. That wouldn’t be such a horrible thing for those of us who are processing information at the normal rate of speed, but with his processing difficulties he will always struggle to understand. That explains why he is so much more sensitive to sound and smell. He now becomes very agitated if his world is “silent.” To make it more complicated, he has visual “agnosia,” which essentially means that his brain doesn’t process that he isn’t seeing things. He thinks he sees everything just like the rest of the world. His vision can vary from time to time. If he is following one thing (such as a maze on a video game) he can probably follow it fine, which makes the rest of us very confused by his variation. The combination of visual loss and slowed processing will be difficult for him. In this fast paced world, that prefers to have everyone the same, it will be a challenge for us to advocate for his needs. (a challenge we were already experiencing , but not understanding) We now have used the word “disabled” for the first time and have confirmed that Daniel will never be able to ride a bike independently, play sports, or drive a car. They believe that he can proceed with school, graduate, and be employed. One of the other children they see, that is a lot like Daniel, is graduating from HS and starting college this year.
Despite his disablilities, they do believe his memory and comprehension ability are fine. We have been told that he should progress with the rest of his class, because he does learn and understand, but will not be able to do the same volume of work. They will need to focus on what he needs to learn and eliminate any non-essential busy work. We will probably teach him Braille as a second language and he will need counseling over the years to help him cope with his differences.
As you can imagine, it was a rather emotional and exhausting visit. We have a lot of work to do to prepare for his future needs and pray that we find the stamina, resources, and people to help Daniel build the bridge to his future. The good news is that there is a future…………………..
Thank you for you continued interest and prayers. We will let you know the RFLP results when they return next week.
Here is a link to some recent pictures: July 18 Pictures
Sylvia, Larry, Thomas, Daniel, and Jen
Monday, July 18, 2005 2:27 AM CDT
July 17, 2005 Day 182!!!!!!
Dear Friends,
We have not updated for quite some time. It seems that even though we thought this event would forever reduce the busy lifestyle we lived previously to a more “balanced” view, we have found that to be more of a dream than reality. The reality is that both Larry and I returned to very busy work worlds. In both cases, work had been postponed until we were back on site and we are now in catch up mode. In many ways I have found the need to focus efforts on work somewhat emotionally distressing. My heart constantly questions my priorities and wonders if I am making the right decisions. Then we received a brief, but valid note that refocused me in a way that only could be done by another parent. Stacy, Andy’s mom, commented on their return to a busy life and went on to say something to the effect that she was thankful for the opportunity to be busy. Hmmmm…….a bit of an awakening.
Daniel has been busy with his tutor two hours a day. He also continues to improve with the assistance of OT, PT, and speech therapy twice a week. He seems to like the busy days and now makes a point of letting us know that he no longer watches TV like his brother does. We suspect that the difficulty he has seeing and processing information may be the reason behind the change, but it is one time when we agree that his disability may be a benefit. He continues to be on IV fluids for four hours a day and all of his meds. Eating and drinking are probably improving some, but he now also claims to “hate the word, eat.” I’ve considered changing that to something like “inhale,” but somehow that doesn’t quite fit. Maybe we will try asking him to “digest” his food……a bit technical, but a change. The biggest milestone happened Friday……….he hit 180 days post transplant. WOW!!!
Thomas and Jennifer have also had busy summers. Thomas’s activities vary week to week. He has been in a weekly basketball tournament, attended 2 camps, and has learned a variety of chores this year (laundry, watering and my personal favorite……running the vacuum). Jennifer is working for the local recreation department coaching 4 to 9 year olds in both T-ball and basketball. Can you imagine trying to herd 4 and 5 year olds into a game of T-ball when the temperature outside is 90 degrees? She seems to manage it far better than I would. She also attended orientation at Drake, where she plans to transfer this August.
The BIG hit in the last week was a visit by our friend from the Ronald McDonald house and transplant life, Alicia Blackmon. She came all the way from Alabama to get a taste of Iowa. It was great to see her and the kids had a blast. We will include a few pictures of her visit. Larry and Thomas drove to St. Louis yesterday so she could fly back home with her dad. Today, Larry feels a bit disoriented. I’m not sure if it is the 700 miles they drove yesterday, or because I rearranged the furniture while he was gone.
We leave for Minnesota Monday afternoon. Daniel has a full week of appointments including a shortened version of the neuropsychology testing, pulmonary function testing, lots of blood work, vists with Dr’s Shapairo, Charnus, and Orchard, and of course yet another MRI. We have no reason to believe that it will not go well, but as you can imagine there is always a little pre-test anxiety. We appreciate all your continued prayers and prayers for the other BMT families. We will update you on his test results soon.
Here is a link to some recent pictures of the whole gang, including our friend Alicia: July 18 Pictures
Sylvia, Larry, Thomas, Daniel and Jen
Tuesday, June 21, 2005 11:26 PM CDT
June 21, 2005, Day + 156
Hello everyone,
We made the trip to Minneapolis one more time for a Monday visit. We are happy to report that even though last week was a bit unsettling, by the time we got up there he was already “tuned up.”
Last week Daniel was starting to show signs that his kidneys were struggling with all the meds he is taking. His renal function and his potassium started to creep up and the nurse in me kicked into higher gear. After several blood draws and calls back and forth to the BMT clinic, we decided he was probably absorbing his cyclosporine better since he is eating better. As a result, we felt he might be getting too much cyclosporine and they held a couple of doses followed by a dose reduction. His kidneys began to look better almost immediately. He also needed blood again last week and at the end of the transfusion had a big spike in his blood pressure. He is now back on medication for that issue, but we think it will resolve when he gets off some of his meds.
At his visit Monday, his blood pressure looked great. His counts were improving. His renal function was back to normal and we had the shortest visit ever. In a short 2 ½ hours we were done with clinic and headed back to Iowa. We will check labs here twice a week, but do not have to return to Minnesota until July 17th through the 21st. WOW!!!
That week will be a busy one because they repeat all of his pre-transplant tests.
We are waiting on the results of this weeks RFLP (bone marrow test). We think it will at least be stable if not better. When Daniel was transfused last week the blood bank reported that his blood type is now predominantly A+, which is Thomas’s blood type. We are taking that as a good sign.
As we continue on this journey, we are constantly reminded of how fragile life can be and how fortunate we are to be able to have another day. We are sad that both Brennan and now Luke lost their battles. They were extremely courageous young men with remarkable families. We are fortunate to have had the opportunity to share in a piece of their stories and their memories will live on in all of us who watched. Daniel will always have some challenges and at times his care can be challenging. We pray that God will help us remain thankful for the blessings He has given Daniel and that we will serve His purpose in our lives. Here are links to the CaringBridge web pages for Brennan and Luke for those of you who would like to visit and perhaps leave a note:
Luke’s: http://www3.caringbridge.org/wi/lukekaiser/
Brennan’s: http://www1.caringbridge.org/mn/brennan/
Please keep Brennan and Luke’s families in your prayers, as well as all our other BMT friends. May God’s healing presence be evident to all.
Sylvia, Larry, Thomas, Daniel, and Jen
Monday, June 13, 2005 1:20 AM CDT
June 12, 2005 Day + 147
We thought we would do a quick update to let you know that we received the latest RFLP results. They were drawn on the 31st, but were not complete until Friday. By the time it was reported, we were starting to get a little anxious and were pestering the staff a bit. It appears that the marrow ratio has stabilized. He continues to be about 60% Thomas on the “M Fraction” and around 90% Thomas on the “N Fraction.” It is not clear to me the significance of the different fractions, but I guess for now we will be content that it is staying the same.
On the home front, Daniel has needed to have an increase in his fluids at night because his kidney function was declining a bit. We believe the fluid will improve things and we will re-check his labs on Monday. He continues to do his best to try to eat and drink. He is getting a little braver about his choices. He now drinks grape juice instead of water and even tried eggs and cottage cheese again this weekend. Both seemed to settle just fine.
His tutor, Mrs Greenwood, needed to take some time off because her daughter is getting married in a month (IMAGINE THAT!!) His new tutor started Friday. When I ask him how things went, he had one comment …”FUN.” He particularly liked writing his own book. I guess they are off to a good start. We will go to the University of Iowa Monday to visit a low vision specialist to see if they have any recommendations to assist Daniel visually. Our next Minnesota visit is June 20th.
Please keep our other transplant friends in your prayers, particularly Brennan and Luke.
They both are not doing well. They have caring bridge web sites and would greatly appreciate the knowledge that you are out their praying for them. Andy could use prayers for his stomach, but otherwise is doing well. We have heard that Matthew is doing well.
We have not heard from Roman and Titus in over a week.
Thomas is off to church camp this week. He’s a little anxious and could use prayers for peace. Jen starts her job, which will be very busy. She will need stamina.
I would like to clarify one thing that has been mentioned to me several times in the last week. It essentially has to do with the perception that I am a “strong” person or that we are “strong” people to have gotten through this far. I would like to confess that I am NOT strong. In fact, I am pretty weak………..just ask Larry or Thomas. What we do have is an incredible God that has been there with us. At those moments when we thought we couldn’t go on, someone was there to hold us up…..whether it was through an entry on caring bridge, an acknowledged prayer, a phone call, card, meal, or visit. We know that God has been with us and many of you have been his flesh on earth. Thank you.
Sylvia, Larry, Thomas, Daniel, and Jen
Sunday, June 5, 2005 0:43 AM CDT
June 4, 2005 Day +139
“ I still find each day too short for the thoughts I want to think, all the walks I want to take, all the books I want to read and all the friends I want to see. “
- John Burroughs
………”and for all the updates I would like to share with you”…Sylvia’s addition
We have ended up spacing our updates much further apart than what our hearts desire. We appreciate your continued interest and prayers, so much. Each day seems to go by faster than the one before and we are having trouble keeping up. What a contrast from the days we spent in the hospital room about four months ago.
We returned to Minneapolis on Memorial Day so we would be there for a May 31st appointment. As we anticipated, Daniel needed blood, so it was another long day. Other than his red blood cells, the rest of his counts remain stable and where they expect them to be while he is on the Cellcept. They drew another RFLP this visit, so we are anxiously waiting for the results to see if Thomas’s marrow continues to have the upper hand.
As far as the remainder of his check-up, he continues to need additional fluid at night with Magnesium. His kidney function is stable to a little bit better, but still has room for improvement. They did call us back after we returned home and told us that the blood tests that track his nutritional status are not as good, so they want us to track his intake for a few days to ensure he is getting adequate calories. We will recheck that test on Monday. Our next visit will be June 20th.
In the mean time, Daniel continues to go to therapies and see his tutor. This week he will see a vision specialist from Grant Wood Area Education Agency. We hope they will have suggestions that will assist his learning. He is VERY excited that Thomas has finished school for the year. The last day of school he sat on the front step with a sign, waiting for the bus to return with Thomas. Thomas was a bit embarrassed, but managed it well. Larry is overwhelmed with projects at Rockwell and I have also returned to work part time. We still continue to seek that balance in life that has seemed to be quite elusive.
We did hear or see several of our other BMT friends. We ask you to specifically pray for Luke, Brennan, Titus and Roman. Luke continues to be on the ventilator and his progress is very slow. Titus was in clinic when we were, on his way to being readmitted with a fever. It sounds like he has gotten a bit better over the week. Roman continues to be very ill and in the hospital, as well. The most distressing news was about Brennan. Brennan is 13 and underwent transplant for an unusual form of leukemia. He found out this week that his cancer has returned. The doctors have no other treatment options. They did manage to push up their Make a Wish trip, which he and his family are attending now. Andy and Matthew continue to do well, but prayers are ALWAYS appreciated and heard.
Thank you again for continuing to check in. We truly appreciate the effort.
Here are a few recent pictures: June 5 Pictures
Sylvia, Larry, Thomas, Daniel, and Jen
Tuesday, May 17, 2005 10:29 AM CDT
It is 8:45 pm and we are just now returning to Iowa from today's visit. In fact, I am typing this in the car as we drive out of Minneapolis. We will get to Iowa between 12 and 1am. I sure hope Larry can stay awake.
Daniel's check-ups continue to go reasonably well. Today his blood work revealed that his white blood cell count is coming up, his platelets almost make him eligible to be a platelet donor (ok that's a mild exaggeration, but we were pleased), and his red blood cell count continues to be the outlier. He was pretty happy to hear that he no longer has to wear his mask all of the time when he is out and about. He'll only need it in very crowded situations or on the way to clinic, since those environments are probably the most risky.
This was his first visit since stopping the night time TPN (nutrition). His appetite is doing well; in fact, he frequently reports he is hungry. Today at lunch he had both chocolate chip pancakes and macaroni and cheese. Most of us would be able to just watch the dial on the scale move up with that diet, but he is dropping a bit of weight. We think his calorie intake is probably reasonable, but his fluid intake apparently is not keeping pace. His kidney function hand deteriorated as a result, so he will be on a small amount of additional fluid through his IV in the evening until we can make sure his kidneys aren't at risk.
As we anticipated, he did need a red blood cell transfusion today. He seems to be giving the blood bank a bit of a run for their money. He apparently has some unusual antibodies that are making it more difficult to find a match. We anticipated that as well and went to the clinic almost 2 hours before our appointment to give them additional time to type and cross his blood. Even with that, they struggled until 5:00pm to have the blood available. We are very thankful that both the blood bank and the nursing staff were willing to get the work done and stay for the transfusion; otherwise we would be sending this update from a hotel room.
The other news today was that they had drawn another RFLP (donor vs. Daniel) test last week and it continues to be stable, with Thomas's marrow holding the lead. They will repeat that test in another 3 weeks, given that things are stable and that test alone costs about $3000 a test. WOW!!! I know the cost of health care and even I was a bit surprised by that one.
Overall, progress is in the right direction. We will return next week and then they are going to try giving us two weeks off, with lab checks in Cedar Rapids. We are very thankful for the care we are receiving in Minnesota, but are looking forward to a little break from the weekly disruption to the family.
As far as our other transplant friends:
1. Andy and his mom were able to move back home to Wisconsin last weekend. It sounds like things are going well.
2. We saw Sidney and Anna in clinic today. They both are doing well. Sidney's family hopes to return home to North Carolina the first of June
3. Titus and Roman are both in the hospital. They need continued prayers.
4. Luke has taken a turn for the worse. His chest muscles are struggling with the ventilator and his blood gasses are getting worse. More than ever, Luke and his family need all the prayers that can be offered. Please take a moment to visit his caring bridge website and leave a note at: Luke Kaiser caringbridgepage
Thank you for all of your continued interest and prayers. We are thankful for the blessings of each new day.
Sylvia, Larry, Daniel, Thomas and Jen
Saturday, May 7, 2005 11:18 PM CDT
May 7, 2005 Day 111
As you may remember from our last update, we have had a full 10 DAYS off from our trips to Minnesota. We head back North tomorrow afternoon, but it has been awhile since we have given you a glimpse of Daniel. Sometimes during the day to day work of caring for him, we are so close that we loose sight of the progress he is making. In the last couple of days, we have been able to take a step back and see that his progress is truly remarkable. Just six months ago, we were watching Daniel lose ground and were just finding out why. Today, we marveled at how far he has come. His stamina is improving, his appetite is getting there, and his attitude was remarkable (we are trying not to attribute his improved attitude to the loss of SpongeBob priviledges earlier in the week, but it could have had some impact). In other words, he seems to be growing up both physically and mentally. The miracle continues to unfold before our eyes if we only see.
In Genesis 1: 26, it says “Then God said, “Let us make people in our image, to be like ourselves” the more simple translation being that we were created in God’s image. As I was looking through tonight’s pictures, I couldn’t help but smile a bit at that thought. The picture of “Cool King Eared Daniel,” as Daniel called himself, might even make God think twice about the image idea. On the other hand, it is probably just as He planned…. I suspect that descriptors such as joy, creativity, determination, perserverance, love, patience, kindness, and hope are probably more of what He intended. I think you will be able to see some of those tonight as you see a very happy Daniel, pressing on, and growing through this process. We have always felt there would be a miracle in the making and we believe that due to the prayers of those faithfully watching, that it is unfolding.
As for the rest of the family……Thomas is on the final stretch of the school year. He is doing well, but we have noticed a significant increase in homework the last couple of weeks. Jennifer has returned home for the Summer. She had an excellent Freshman year, making the Dean’s list both semesters despite the turmoil in the family. Pretty remarkable. Larry continues to receive additional assignments at work. He is now referred to as “roter man” because of his new work with helicopters. I can only say that I hope Daniel is totally recovered before he is asked to do any flight tests on these machines…….I can only handle so much “risk” in my life at any given time. I am at work VERY part-time. It is enough time to give me something besides Daniel to worry about, but not enough time to be too productive.
Enjoy the pictures. We will update again when we return. In the mean time keep our other transplant friends in your prayers. We hear that Luke is making progress was coming off the ventilator. Andy is doing well. They are anxious to get back home, but do get to visit on weekends. We have not heard any additional news on Titus, Roman, or Matthew. Maybe we will hear more this week.
Click here for the latest pictures: May 7 Pictures
Sylvia, Larry, Thomas, Daniel, and Jen
Friday, April 29, 2005 10:30 PM CDT
April 29, 2005 DAY 103
Hi to all our friends,
This week's visit to MN was pretty uneventful, which is GREAT!!! Daniel’s counts continue to be on the low side with the additional meds to combat his bone marrow mix, but they are stable. His platelets even came up a bit (maybe we should donate to Andy).
He did need a unit of blood, which we thought would perk him up, but the trips seem to be tiring him out as much as they do Larry and I. I suppose in some ways that’s a good thing. Can you imagine if he was full of energy and we were whipped?
Another RFLP was drawn to check the mix of his marrow. We should get those results sometime next week. Daniel’s doctor is switching to clinic days on Monday, so after this visit we aren’t scheduled to go back until Monday May 9th. WOW!!!!
We did find out that:
1. Luke is is making progress on some fronts but issues continue to develop. His kidney function is improving and the red blood cell breakdown is slowing down, but he has developed GI bleeding. They are concerned that it might be GVH disease returning. We had an opportunity to see his mother, Diane. She is obviously worn down, but really appreciates all of the prayer.
2. Roman and Titus continue to need prayers. Roman is back in the hospital. Titus remains there.
3. Andy continues to do well, but needs platelet prayers. He gets to go home on the weekends, so it is getting harder for us to see them.
4. Matthew has started his radiation and is only about a week away from finishing. His transplant was after Daniel’s, but he has lots of hair. He looked great and seems to be feeling well. His mother reports that they may be able to go home mid-May……..there stay has been 9 months!!
That’s about all we know.
Last Fall we had to replace our sidewalk and in the process created a small flower garden. I was so excited that we ended up planting 150 bulbs in this spot. In Cedar Rapids, all the other Spring flowers are almost done blooming and these are just starting because they are on the North side of our house, which apparently is colder. It’s been nice because we have been able to see them emerge.
This week, I was observing this garden. The weather has been a little less than ideal, with rain and wind. Since the flowers have been slow to stick their heads out, I have continued to be hopeful that all 150 would eventually show themselves, but it looks like that is not going to be the case. In fact, only about one third came up. Of those that came up, the daffodils have done the best and are little bits of sunshine amidst the clouds. The tulips are variable. Some are standing tall, some have fallen over, and some are stunted, as if they had changed their mind half way to blooming. Then, of course there are the other two thirds, (100 bulbs, but whose counting?), that never bothered to give it a shot.
I decided that flowers are a lot like we are in the midst of less than ideal circumstances. You can either “bloom where you’re planted” and bring a hint of brightness. You can try but give up and fall over or I suppose you can decide never to get up. I currently am blessed to have several people in our lives that are daffodils, including Larry, Thomas, my sister Rachel, our friends Dan and Sara, and definitely Andy’s mom, Stacey. I kind of think I’m a leaning tulip, but I haven’t tipped completely.
Take care and thanks for checking in. We continue to be grateful for all the encouraging notes and prayers.
Sylvia, Larry, Thomas and Daniel
Saturday, April 23, 2005 12:33 AM CDT
April 23, 2005 Day +97
It has taken us a few days to complete this most recent update from our visit to Minnesota on Thursday. We aren’t sure where all the time goes, but both Larry and I have the feeling that at times “it’s just too much.” The problem is that we aren’t entirely sure what that means other than we aren’t getting much beyond the daily necessities accomplished.
Daniel’s appointments went well. His final “RFLP,” which is the test for his bone marrow confirmed that he is back to 60% Thomas’s marrow. That combined with the good report on his MRI meant that they have at this time decided to continue the current medication regimen and not do anything else. That means that any discussion about a second transplant has ceased at this time. One big AMEN!!!!!
We also saw Daniel’s neurologist, Dr. Charnus. He reviewed all of the MRI’s with us, since his original MRI in January. We knew that the MRI in January showed that the disease had at least temporarily arrested. At the time, they felt it might have been technique, but at this visit Dr. Charnus indicated that he really didn’t know why. His options were that it had just spontaneously arrested, the high dose Ursadiol they had started or “the power of prayer.” Since that time, there was some suggestion that he had progressed a bit during transplant, but now that looks like it may have been just changes associated with the pre-transplant conditioning regimen. The bottom line is that the ALD continues to be arrested and he did not progress significantly during transplant. A second big AMEN!!!
So at the end of the day, we left feeling very positive about the results of his transplant thus far. His counts are dropping as a result of the new medication, but it is correcting the bone marrow problem. He may need more frequent transfusions and we will continue to be cautious about exposing him to illness for awhile longer.
Thomas continues to do reasonably well in school. We do think that just like the rest of us the weekly transitions can be tiring. His attitude and concern for others is remarkable.
We are very proud and amazed at his continued response to this situation.
We were able to check in at the Ronald McDonald House and spend some time with our friend Stacy. Her 12 year old son, Andy, continues to do well following his transplant. They are now able to go home on weekends, but need continued prayers, especially for platelets. His web site is www.caringbridge.org/mn/andyleonard.
Two other families are in great need of your prayers and notes to their websites. Luke is 18 and is going through his second transplant. He has developed some significant problems with his lungs and kidneys. His site is www.caringbridge.org/wi/lukekaiser.
Titus is one of the two brothers in the midst of transplant. He had a second transplant because his marrow returned after the first. This time, he has also recovered his own marrow. His family has a very strong faith, but we could tell that they are very worn down. Please pray for them as well. www.caringbridge.org/titusandroman.
In a situation like this, it is clear that there is no end to the possible prayer needs of the world around us. I know that these children are just a few of the many people out there that need our prayers, but I also believe that God knows all of our needs and even brief requests are heard.
Sylvia, Larry, Thomas, and Daniel
Saturday, April 16, 2005 10:25 PM CDT
April 16, 2005 Day + 90
We received word that the MRI of Daniel’s head was fine. They tell us that the disease had not progressed significantly after the last MRI at Day +30 and that it appears that the disease has been arrested. That was WONDERFUL news and a HUGE relief. It gives us some breathing room as we wait on Daniel’s most recent bone marrow results. This was also the first time that we had a clear indication that the transplant had the intended result.
Today, Larry and I had the opportunity to go on a bike ride thanks to our good friends Dan and Sara. If you don’t know Larry, I want you to know that he is the MOST optimistic person you will ever meet. He has experienced challenges in the past that would have brought most of us to a breaking point, but he continues to face each day with an incredibly positive attitude. That has been a real blessing during this process (even on those occasions when I growled at his positive response to the things about which I felt less confident). At one point as we were on our ride back toward the car, we were obviously headed up hill. You can imagine how we were feeling if you consider how dramatically different the bike ride was from our inactivity of the last few months. I was in the lowest gear possible and going slightly faster than a snail, when Larry reassured me that the hill ended about a quarter mile away where the trail started to curve. A bit puzzled, I ask him how he knew that fact. His response was…..”because that’s how far I can see!” Hmmmmm…… after momentary contemplation, it occurred to both of us that in many ways that is the metaphor that describes the best way to get through this situation and any challenging situation. Never look beyond what you can see or as the Bible says, don’t worry about tomorrow, there is enough for today.
So, for today, we are breathing a little easier and thanking God for the blessings He has provided so far. We know there will likely be other hills, but we will face them as they come (rather than anticipate them).
For those of you who really want to know…………it wasn’t the end of the hill. The hill continued around the corner. It was a bit distressing when we rounded the curve, still in first gear and still plugging along, but boy was it rewarding when we finished the ride and got to the flat part. Maybe that will be the rest of the story.
Sylvia, Larry, Thomas and Daniel
P.S. Please keep our other BMT friends in your prayers. We have heard that Luke has returned to the hospital with respiratory issues. He and his family especially need your prayers.
Thursday, April 14, 2005 10:02 PM CDT
April 14, 2005 DAY + 88
This has been a VERY eventful last few days. If you’ve been following along, you will remember that the greatest concern of late was the mix of Daniel’s bone marrow. At our last visit we had been told that Daniel’s own marrow was beginning to grow and that Thomas’s marrow was about 70% of the cell count. They started a new medication and redrew the “RFLP” to make sure that there was not an error. Prior to returning to Fairview on the 13th, I had a conversation with Teresa, our nurse coordinator, who reported that the repeat test showed that Thomas’s marrow was now only 40% of the cell count and that Dr. Orchard and Dr. Charnus felt that we needed to repeat the MRI of his head at our visit today.
As you can imagine, we immediately felt the panic set in. We didn’t have any answers to the questions of the last two weeks, but what we now knew was that the results were true, Thomas’s marrow was losing ground, and if the doctors were talking, they must be concerned. The nurse in me immediately translated that a second transplant must be in the discussion, although I had no real grounds for making that assumption.
We felt VERY relieved to see Dr. Orchard walk in the exam room door today. Just his presence can be calming and it had been weeks since we had any direct contact with him.
It was quickly evident that he was pleased with Daniel’s current condition and that he agreed that Daniel was making progress in the right direction, even though the eating thing is slow. The good news is that the further we get from the original transplant, the easier any additional intervention will be for Daniel.
Here is what we now know about the marrow issue.
1. They are concerned about the decrease in percentage of Thomas’s marrow and like us, were a bit surprised at the large drop between the first and second draw. Another “RFLP” was drawn today to see if we could determine if the new medication, Cellcept, is having any impact.
2. There isn’t any real scientific data to explain this process. They are making some educated guesses about the cause, which is how they make treatment decisions. We are very thankful that we are working with some highly educated and experienced physicians in this area. They are completely honest about what they do and what they don’t know.
3. Today they repeated the MRI, but based on Daniel’s progress we suspect that at worst the disease is stable and at best it is arrested. Here are the possible scenarios:
• If his MRI is stable and the repeat “RFLP” is stable or Thomas’s marrow is gaining ground, we hold the course with the Cellcept and watch.
• If his MRI shows progression of the ALD and Thomas’s marrow looses ground, we will need to consider a second transplant, this time with cord blood because they would assume that Daniel has developed sensitivity to Thomas’s blood. They have already started a search for a cord sample, as a back up plan. The pre-transplant conditioning regimen would be less intense than his original transplant because Daniel’s immune system is already weaker. They feel it is unlikely that the second transplant would fail marrow wise, but we assume all the other risks of transplant are the same as the first round.
• If Daniel’s MRI is stable, but the marrow worsens, we could consider giving Daniel some of Thomas’s lymphocytes (white blood cells) in an effort to give Thomas’s marrow the edge. This could be done without much of a conditioning regimen and probably on an outpatient basis.
Daniel again was INCREDIBLE during the MRI. He was able to stay still for the entire scan without any sedation. I sit at the end of the table so he can see me, but I really think the benefit is more mine. At those times, his eyes clearly demonstrate that this little boy can be very grown up and tough.
We are thankful for at least the idea that we are not sitting with our backs against the wall and that there are several options available. (that was particularly comforting to my engineering husband) Our next appointment is next Thursday. We expect to have a clearer picture at that point.
Our boat was a bit shaken on Wednesday, but we continue to have faith that God is with us and watching. We know that He has a purpose and a plan. There is a song by the group “4 Him” that I have listened too multiple times in the last 3 days and probably best describes where we stand.…..this is the chorus. Whatever your burdens, we pray that you too will find comfort in your faith.
Where there is faith
There is a voice calling, keep walking
You’re not alone in this world
Where there is faith
There is a peace like a child sleeping
Hope everlasting in He who is able to
Bear every burden, to heal every hurt in my heart
It is a wonderful, powerful place
Where there is faith
Thank you for your continued thoughts and prayers. If you have seen the most recent Reader’s Digest there is an article proclaiming the power of prayer. We can attest to its truth, thanks to all of you.
Sylvia, Larry, Thomas and Daniel.
Tuesday, April 5, 2005 9:52 AM CDT
March 5, 2005 Day 78
Perspective
Today's web entry will mostly be pictures of Daniel playing since he returned home, but last night I spent a fair amount of time contemplating a pop-sickle. I’m sure that isn't something that any of you have probably spent time considering, but it made me pause for a moment to really think about what an impact our perception of something can have on the way we see a situation.
As you know, our big challenge with Daniel at this time (or at least the one we can impact, we think) is his eating and drinking. Eating has been slowly progressing in the right direction. His desire to eat McDonald's French fries has returned, which was another moment when I realized my perspective was changing. In the past I groaned, yesterday I cheered. It wasn't until the pop-sickle that I really started contemplating all of this on a "deeper" level.
Drinking has not progressed at all. In fact, we have been watching his kidney function to make sure he isn't getting into problems because of his lack of desire to drink. Last night, Thomas discovered the pop-sickles I had forgotten about in the freezer. Daniel joined him quickly to investigate the new find and promptly began eating (or in my mind drinking) a pop-sickle. That was when I realized how important perception and perspective were in this whole process. For Daniel, the idea of drinking is horrible, but when it's form changed it was tolerable. In fact, he didn't know that he was drinking. (Trust me, we didn't share that insight.) His perception of issues and thus perspective on this whole process has been obviously much different than the adults, but one that is admirable.
Daniel's perspective has been shorter term. He limits his outlook to a few days or even just a few hours (when does Thomas get home?) Maybe that's what God intended us to do when He tells us to only worry about today because tomorrow will have enough worries of it's own.
Daniel's long-term outlook is focused on positive events. He is counting the days until Day 100 when he can go outside without a mask. He is looking forward to the day when his "line" comes out. Maybe that is what God calls us to do through our trials. Not whine through the moment, but to focus on maintaining our faith and positive outlook on the future.
As we have started to re-engage in life here at home, we have struggled at times to reconnect with the previously familiar world. Much of the time, I've wondered what my problem could be and have been a little frustrated. Some of it is clearly the need to re-organize our environment and schedules, but I think the greatest issue is the change in perspective. It is difficult to re-engage in this fast paced environment. I find myself wondering why so often it is the little things that catch our attention, while what is more important just slips by. Even more difficult is trying to decide, what really IS important?
On one hand we would pray that none of you ever experience a trial like this, on the other hand we know that no body ever gets through life without something. So, since that is a given, we pray that when your trials come and go that you are left with a heavenly perspective and that it follows you throughout your life. We pray that the little things remain little and that when you are faced with larger challenges, like relationships, that your focus is clear.
So enjoy today's photos of Daniel. He knows that even though life has changed a bit, in the end he is still a kid. It has been great to see him play: Daniel at Home Pictures
Sylvia, Larry, Thomas and Daniel
Thursday, March 31, 2005 10:52 PM CST
March 31, 2005 Day + 74
We are uncertain as to whether the web site is continuing to be checked, but on the outside chance that it is and messages aren’t being left, we thought we’d update since our return home. We were able to make it home in one trip thanks to our good friend Dan and my sister, Rachel and her husband Ted. YEA!!
It has been a very busy week. We left town in the “flurry” of Christmas activity and returned home in the “flurry” of Easter. Fortunately, the Easter bunny was able to land on his feet, so to speak. We were able to
sneak in the back of the church to participate in worship, which was the highlight of our return. We had a GREAT deal to thank and praise God for this Easter. In addition to our return, Jennifer was home briefly and the boys enjoyed seeing her. She is doing very well in school. Chris also joined us and seems to be doing well in school, as well. The boys also had a chance to spend time with their cousin, Ben, who has been a great support for them when he has a few moments between school efforts.
Thomas returned to Regis. He was a bit apprehensive, but seems to have adjusted quite nicely. He received a warm welcome back from his friends, which helped tremendously. I helped him get his books to school on Monday and I could feel him relax quickly when his friend, Will, greeted him at his locker. That was yet another blessing. The Ronald McDonald House school served him well. He was caught up with his class and was even ahead in one class. He decided to try going out for track this year. We think it will be enjoyable, once he gets over the aches and pains. It is the first time I have seen Thomas struggle to walk due to discomfort. That is probably the one area that suffered during our time at RMH.
Larry returned to work and finds it to be unchanged...lots of engineers with more than enough work. They greeted him with kind words and plentiful work. His department also planned a fund raiser for the RMH this week, which was very successful.
We did return to clinic today. Overall, they continue to feel that Daniel looks good. His counts were good and despite the fact that we are struggling to get him to eat and drink, he is maintaining his other tests while on nighttime IV nutrition. He did need an injection of Procrit today. If you watch TV, you probably know that it is used to treat anemia. We hope it will give him a little more pep and prevent the need for transfusion in the coming week.
We did find out today that the last molecular genetics test they did to determine whose marrow is growing, shows them that Daniel’s own marrow is beginning to return. This was a rather unpleasant surprise, since the first test returned 100% donor cells. Unfortunately, we were unable to talk with Dr Orchard about the implications of this find, since he was unavailable today. It is not clear if this is a rejection issue or a graft failure issue. We also do not know what the long term implications are related to his ALD. Today they decided to redraw the test, to see if it was an error (we can always hope), in the meantime they started him on yet another medication called, cellcept. That now makes a grand total of 42 pills a day. This newest pill is supposed to be given on an empty stomach. I wonder if pills are considered to be something in your stomach?
We are rather worried about the newest test results. We are trying not to panic until we have a chance to talk with Dr. Orchard. In the mean time, we are praying that Daniel’s marrow will give in and let Thomas’s take over……………….hmmmm, we hope their marrow doesn’t play together like they do or we could be in REAL trouble. Thomas almost always gives in to Daniel, in and effort to keep the peace.
We have plenty to keep us busy until the new results come in. It is taking us a bit longer than expected to get settled back into the house. We aren’t sure why other than we are still somewhat worn down from all the transitions. I admit that I feel somewhat overwhelmed.
Please continue to pray for all our other friends at RMH.
1. Andy and his mom Stacy continue to stay on course. He is in school for the first time this week at RMH and seems to be doing well.
2. Luke, another teenager who was undergoing his second transplant is in the hospital with significant graft vs. host disease in his gut.
3. Roman, Titus, and their parents need lots of prayers. Titus is doing better, but his own marrow seems to be regrowing again after a second transplant. Roman is doing reasonably well.
4. Matthew………..we have not heard any news, we hope that is good.
Thank you for all your continued thoughts and prayers.
Sylvia, Larry, Thomas, and Daniel
Wednesday, March 23, 2005 5:24 PM CST
March 23, 2005 Day + 66
“ Great is His faithfulness; His mercies begin a fresh each day. I say to myself, “The Lord is my inheritance; therefore I will hope in Him!” Lamentations 3:23-24.
We have been hesitant to make the final commitment about the week, but Daniel’s eyes and spirit in the last two days have led us to believe that we really are going to be able to return home this week. Even our neighbors and care partners have noticed a significant change in him during the last 4 days.
Daniel is consistently keeping his medications in his stomach, which I personally GREATLY appreciate. He has been nibbling at a variety of food options throughout the day, swallows his spit about half the time, and will occasionally drink small amounts (if bribed with money). Seemingly small steps that are huge in the scheme of things.
We will return to Cedar Rapids Thursday afternoon. We will return to Minnesota weekly for clinic appointments, but it will be wonderful to be in our own space 6 out of 7 nights a week.
Daniel is still considered to be at risk of infection. We discussed the “rules” with the staff at our visit on Monday and in general, we will continue to need to be careful, avoid illness and crowds as much as possible, and respond quickly if he does develop a fever. It won’t be quite as restrictive as the “house arrest” that Martha Stewart is experiencing, but please understand if we remain a bit distant over the next few months, even though we are home.
In some ways, it seems appropriate that this is the weekend we would return home. The process started during the Christmas season, Daniel was discharged from the hospital on Ash Wednesday, and we will be home at Easter. As the spiritual seasons have moved forward this year, it has been a constant reminder to us that God has been faithful to all of us and that our hope remains with Him.
Thank you all for your continued visits and prayers. As we said in the beginning, this has been a miracle in the making………….a great deal of that miracle was created by those of you who have surrounded us with God’s love here on earth. We are incredibly thankful.
The following are pictures of many of Daniel’s friends and care providers that we have been blessed with during our almost three month visit: Daniel’s Friend and Care Givers
As we leave RMH and our community of friends here, we pray that God’s presence will remain strong in their hearts, that they will remember His faithfulness, and that the children and families that remain will be full of hope!!!
May God Bless You this Easter Season,
Sylvia, Larry, Thomas, and Daniel
P.S. We will keep you posted at this site for a few more weeks, but ultimately will plan to switch any updates to an e-mail list. If you wish to continue to receive updates or if you wish to come off the email list, please e-mail Larry.
Saturday, March 19, 2005 9:17 AM CST
March 19, 2005 Day + 62
Three months ago if anyone would have said we would have hesitated when they told us we could go home, I would have laughed. “Yea, RIGHT!!!” Two days ago it happened.
The GREAT news is that Daniel’s biopsies showed that his gastritis was NOT caused by
Graft vs. Host disease. That was a huge relief!!! It tells us that his stomach just needs more time and tender loving care to heal. They also told us that we can go to weekly visits and that Dr. Orchard was fine with the idea of us spending the greatest part of the week in Iowa.
Our problem was that when we received the news on Thursday, it was following two pretty rough days for Daniel. He had been vomiting more frequently and in larger amounts. He had for the first time started to cry and tell us “I can’t do this anymore….I can’t take anymore pills” and they had changed the formula for his IV nutrition twice in three days. Larry and I decided that until he was a little more stable we were not comfortable leaving……………but there was some mental comfort in knowing that we had that as an option. It also gave us next week to transition his therapies from here to Iowa. We will need reports to take with us to ease that transition. Interestingly, when we returned to clinic later in the day for labs and told them we were holding off for one more week, they seemed to agree that it was smarter to stay put. Two more appointments were quickly added for next week and I think we may need labs today due to a mix-up in his latest TPN formula. Hmmmm…….
So for now we are constantly trying to “engineer” his pill taking so he doesn’t vomit. Yesterday he did throw up after each dose of cyclosporine until bedtime, but it was much smaller amounts. We are now 26 minutes past his morning dose and he is hanging in there (after 20 minutes we don’t have to redose, after an hour and a half we think he’s made it past the most likely time…….but who’s counting?) The word from the staff was to “spread out his pills more,” which we have always tried to accomplish. We are still trying to calculate how to best spread 36 to 40 pills over 13 hours, with time in between for some meds to settle and take effect.
We are packing. Thomas has spring break this week and is planning to be at Regis next week (which is creating a bit of anxiety for him……switching classes, locker combinations, more homework…..). We have made the initial contacts to switch therapy sites and will need to make plans for a tutor for Daniel. Our goal is to return home next Thursday, if all goes well. The thought of being home for Easter weekend is beyond words. We thank God everyday for the MANY blessings He has provided in this experience. It would be a real treat to be home with our family and Hillside family to worship Him at the time of year when we all are reminded of His ultimate blessing and sacrifice……………Jesus.
We will keep you posted this week. Maybe we will have some packing pictures…..or maybe not.
Sylvia, Larry, Thomas and Daniel
Continued prayer requests:
1. Andy and his family. Andy is doing well and hopes to taper off some of his meds beginning next week. We pray that process goes well.
2. Titus and Roman. Titus is recovering after his second transplant, but continues to have MANY challenges. Currently, he is trying to get over a bout of pneumonia. He needs your constant prayers. Roman had a brief return to the hospital, but is back to RMH and doing well. Pray for continued strength for their parents……I can not begin to know what it would be like to have 2 going at the same time.
3. Luke, who looks great and we believe is continuing to do well.
4. Matthew, who also is doing very well. He will need some additional radiation, which was in the plan, but an additional challenge.
5. Sydney, who returned to the hospital last week with fevers, but has not been able to come back to the house. We hear that things are going better.
6. Cory Blackmon’s family, Allen, Carrie, and Alicia. We talked to them last week and they are busy trying to readjust their lives. Alicia e-mails Thomas frequently and seems to be settling back into school, but misses her friends here……and we miss them.
7. All the other children, adults, and families that may not know God’s presence as they go through these trials.
Click Here For Ronald McDonald House "Tour" Pictures:
Ronald McDonald House Pictures
Wednesday, March 16, 2005 9:54 PM CST
March 16, 2005 Day + 59
We know many of you are wondering what the results of Daniel’s tests revealed yesterday. What they found was gastritis, or essentially irritation of the stomach lining.
That isn’t a big surprise. They are not sure what the underlying cause may be, as of yet. The cause is what we really need to know. If it is graft vs. host disease or an infection of some sort, it will require additional treatment. If it is just related to the transplant process, all of the meds he is on, and the lack of food, it will just take time. The second option is more likely to allow us to come home, but Daniel’s well being is what is most important. As you know from our previous update, he was somewhat dehydrated and more anemic when we returned Monday. We think it was a clue that the time to return home isn’t here yet. For now they added an additional medication twice a day, to try and protect his stomach.
Today, we are still waiting to see why he became so anemic so quickly. It may be related to the conversion to Thomas’s blood type, but the initial test was somewhat “grey.” For now they are waiting to see what his red cells do over the next few days and weekend.
His renal function improved with the increase in his IV fluid volume at night. Daniel doesn’t like the extra time on the IV, but doesn’t like eating, drinking, or throwing up either. He seems to understand that for now his choices are limited. Tonight he also wanted to switch back to IV cyclosporine because he has had trouble keeping that down for the last three doses.
So, I guess for now there are no big surprises and Daniel continues to hang in there. We hope tomorrow brings us more answers and some relief of his stomach problems. I’m not always sure who struggles more when he is retching…….we feel so bad for him.
All of our other transplant friends seem to be doing well. Everyone has good and bad days, but for the most part the trend seems to be forward. We are thankful for the time we did have at home and the opportunity to see a few of our friends and GO TO WORSHIP at Hillside!!!! We are trying to remember Kory’s sermon and not save worship for just that one hour on Sunday. With that being said…………. Thank you for the blessing of your continued prayers. We know that God continues to watch over Daniel and that it is only a matter of time before we see him improve. We thank God for His plan and purpose for this time in our lives, whatever it may be…………………………
Sylvia, Larry, Thomas and Daniel
Click Here For Ronald McDonald House "Tour" Pictures:
Ronald McDonald House Pictures
Saturday, March 12, 2005 10:51 PM CST
March 12, 2005 Day 54
Hello to all our web watching friends,
What a turn of events we have had this week!!! We entered the week rather anxious about Daniel’s wellbeing. His inability to keep any food down and the CMV titer felt a bit weighty, even though we knew that overall Daniel was doing well. At our visit on Thursday, Dr. Orchard seemed as perplexed as we have been about Daniel’s stomach. He will see a Gastroenterologist on Tuesday and they will take a look at his stomach. His second CMV titer was negative, which felt like we had dodged a bullet.
I did ask Dr. Orchard what it would take to get to return home to Cedar Rapids. After a brief discussion, much to our surprise he sent us home for the weekend. He felt the “normal” environment might help Daniel and stimulate his appetite. We, of course, didn’t need to be told twice (well I did, but Larry was practically bolting for the door).
We came home Thursday night and will return to Minnesota on Monday morning. Depending on the results of the scope, we hope to be able to return on a more permanent basis in the near future. We will still need to follow up in Minnesota on a weekly basis for awhile, but 6 days in our own bed and 1 out seems very reasonable.
So for now,
1. We THANK GOD for continuing to watch over Daniel and helping him continue to heal.
2. We thank God as well for the continued support from our friends and family. I don’t know how we would be able to get through this without all of the support we’ve received.
3. We pray that God will continue to surround the Blackmon’s (Cory’s family). We have missed them and felt like a part of our family is missing. We are glad that they are surrounded with their family and friends.
4. We continue to pray for all the other transplant children we keep in touch with, Andy, Matthew, Roman, Titus, Sidney, Luke, and Madeline. They are all in the recovery process.
Check out the pictures. As promised, we have a tour of the Ronald McDonald House. The pictures will have their own captions, so you know what you are viewing.
Click Here For Ronald McDonald House "Tour" Pictures:
Ronald McDonald House Pictures
Sylvia, Larry, Thomas, and Daniel
Wednesday, March 9, 2005 0:36 AM CST
March 8, 2005 DAY + 50
Hello Everyone,
Tonight will be a quick update on Daniel, since we have not filled you in recently. Larry is busy collecting pictures for a longer update tomorrow, which will be a visual tour of the Ronald McDonald House taken when Daniel’s friend Evan was here over the weekend.
Daniel continues to do well. His counts in clinic on Monday were still improving. He will probably need blood at the end of the week, but that is not unexpected. His new bone marrow is “churning” out the white blood cells and platelets without a problem. At the end of last week we switched his cyclosporine from IV to pills. I was a bit worried because this is the most critical of the medications he is taking. Fortunately, he has been able to keep down every dose and his blood levels were fine with the change. We are pleased that it has gone so well thus far and Daniel is particularly happy that he is “free” from any IV’s for 12 hours a day!! We were able to stop his blood pressure medication and his blood pressure was fine on Monday. That is one less pill a day, which may not seem like much, but every little bit counts.
Our biggest concerns are:
1. His eating is still not picking up as well as we had hoped. Over the weekend when Evan was here, we thought we were turning the corner. He ate about 400 calories on Saturday and 500 calories on Sunday, which was enough to stop the lipids (which is the fat) in his IV nutrition. Unfortunately, Monday his appetite dropped off and he was very nauseous throughout the day. Today he wouldn’t eat until very late in the day and then we struggled to get in about 200 calories. I’m not sure what our choices will be when we see the doctor on Thursday. We considered kidnapping Evan, but thought that might not be acceptable (although we think it could be fun).
2. Daniel is checked weekly for signs of a virus called CMV or cytomegalovirus. It is a very common virus and in adults and healthy people, probably presents as no more than a cold. In transplant patients it can cause significant problems, so if they are CMV negative at the start of the transplant, they are monitored weekly. Daniel’s titer came back “weakly” positive last week. They rechecked it again this week. If it is becoming positive he will need about 8 weeks of IV antiviral treatment. He has been a little more winded this week. We are not sure if that is due to his hemoglobin or could potentially be related to the CMV. We were told not to exert him until the titers are back.
3. Larry and Thomas are both trying to decide if they are getting colds or if it is just the dry air we are living in that is causing some mild upper respiratory symptoms. I hope it is the later.
4. Finally, Thomas is feeling the impact of Alicia, Cory’s sister, being gone. They were almost always together over the last few weeks and had developed quite a bond. We are seeing more of him, which is nice, but he prefers the independence of friends his age. The boy across the hallway is 12 and is also recovering from a transplant. We are waiting to see if Thomas is getting ill before we consider letting them play video games.
I think that is it for tonight. Thank you for all your continued interest and prayers. We really are very anxious to get the green light to go home. Pray the above issues resolve themselves quickly.
Sylvia, Larry, Thomas and Daniel
Saturday, March 5, 2005 11:57 PM CST
March 5, 2005
“I have been there. I know what fear,
pain,
sorrow, are all about.
Yes, I have been there.
I’m standing with you now.
I have been there.
And I came to build a bridge,
oh, so this road could lead you home.
Oh, I have been there……………….”
From Mark Schultz’s song I Have Been There.
Dear Friends,
Tonight it is hard to know what to write and I hope the words here are what they are supposed to be. Tonight’s update will not be about Daniel, but Cory Blackmon. He is the other ALD child whose family has been walking down this path with us. He was about 3 days behind Daniel in his transplant, but his course has been rocky, as you could tell from our prayer requests. Larry and I visited the hospital yesterday evening because we feared for Cory and his family. He had been walking a fine line between life and death for several days. About 3 hours after we left, we received a call from his parents letting us know that he had lost the fight. It was 5 years to the day his brother Clint died from complications during his transplant for ALD. Our hearts break for this family. The bond that develops here is quick, but strong. Probably because there are few situations in which children have an illness that so quickly locks you in a position where all of the options carry immediate life threatening consequences.
As we have searched our hearts this last day, trying to understand what happens we find that as in most situations like this there really aren’t good answers. We believe God always has a purpose and a plan, but if we are honest…………we don’t really like this one. There is a tendency to want to negotiate for a better plan design……….or at least what the human side of us perceives to be a better design. Thoughts not only of Cory, but of the other children that have been brought to our attention in tenuous situations, flood our minds.
Every time I have prayed today, the lyrics to the song above have played in the recesses of my mind. “I have been there………….I am standing with you now.” There is comfort in knowing that God himself has felt the same things we feel, but more importantly, He built a bridge with His pain and sorrow, so that our children can live on. We know that Cory and his family love God and that as we write this, Cory has been healed, because God was here. Our human hearts cry out for a “plan design” that can be lived out on earth, but what better design could God create than one that ends in heaven?
Tonight we pray ………………..
• Even though we will miss the Blackmon’s and they will miss Cory, that we will remember that God understands and has felt the pain. As a result of His pain, Cory will live on.
• That all the other families out there in tough situations will find and know God. We pray that they will know that His plan is far better than any we could design. We pray that their faith will remain strong or grow.
• Mostly, we pray that all who are suffering, scared, or in pain will know that God is standing with them now. God’s bridge is choosing life………..even if it isn’t here on earth.
If you would like to send a card to Cory’s family, the address is on their caring bridge web page at http://caringbridge.org/mn/coryblackmon
Sylvia, Larry, Thomas, Daniel and Jen
Thursday, March 3, 2005 7:57 PM CST
March 3, 2005 Day 45 (but who’s counting?)
Dear Friends,
Despite our promises, we have not done so well keeping up on the web site. I guess that is evidence that the time in the hospital had a much slower pace than that of the outpatient world. I never cease to be amazed at the time it takes, just to take pills. WOW!!
Daniel’s progress continues to be steady and in the right direction. Interestingly, today before we visited with Dr. Orchard, Daniel was full of questions……………………….
• When can I be off my line (IV) for 12 hours in the day?
• If I take more pills, can I be free for longer?
• How much do I have to eat before I can be off my line all day and get it out?
• Will I still have to take pills when I’m at our regular house in Iowa?
Very good questions and he did get some answers. As of today, he decided to take more pills each day (15 additional pills, now making the count between 28 and 32 pills a day, depending on the day). He now will have a full 12 hours without any IV’s or bags to carry around. To be off his nutrition, he needs to eat around 1500 calories a day. For most of us, that sounds like a diet, but for him it is A LOT of Spaghetti O’s, star mints, and life savers. No one will give him any answers about how long he will continue to have his line, because that really depends on his intake. He tried telling the doctor that “I’m trying my best,” eliciting some empathy, but no commitment to remove the line. Unfortunately, he will be taking the medicine when we get home, but we will be home and he won’t have to do it for the rest of his life. His marrow (or Thomas’s marrow) continues to perform quite well. His white blood cell count was 5,100 : Hgb was 10.5 : and his platelet count was 116,000……enough for a spanking if he needs it (just kidding).
We continue to ask for prayers for the following:
1. Cory, the other ALD patient we have ask you to pray for is not doing well. He is on a ventilator and requiring 100 xygen. They have all of the stops pulled out to help him, but he is walking a very fine line. Please pray that he stabilizes and improves. Please also pray for his family to remain strong. His sister is 11 years old and is in school with Thomas. She was at the hospital all night last night with her parents. Our hearts go out to them.
2. Pray for a child that one of our friends knows……..his name is Andy. He has a cancerous brain tumor that reoccurred. We understand that he had a 12 hour operation yesterday and is also slated for a bone marrow transplant. The family has been given a grim outlook, but we do believe that the God will work in this situation as well.
3. My dad’s surgery went reasonably well, but he is still in the hospital to see if it worked. Pray it worked and that his work (which is worrying them) will not be overwhelming.
4. Pray for Daniel to eat and that his stomach tolerates the food. For the rest of us……..we just need to continue to take each day as it comes. I am ashamed to admit that these last few days have been a bit harder. We miss home more and are a bit more irritable. We need to be thankful for Daniel’s progress and for the gifts we have received, some days that’s easier than others.
I thought I’d close with the fortunes out of the two fortune cookies Daniel picked up at supper last night. He didn’t eat the cookies, but he did work on a corn dog…….I held my breath, but it stayed down………YEA!!
“Do not hesitate to tackle the most difficult problems.”
“Your joyfulness will prolong your days.”
Both of these reflect Daniel in ways that we could have only guessed before.
Click Here For Mar 3 Pictures: Mar 3 Pictures
Take care and thank you
Sylvia, Larry, Thomas, and Daniel
P.S. Everyone who requested a copy of the video of Daniel that we made should have received one by now. If you have not received it, or if you didn't request one earlier and would like one now, send Larry a note at the author's address (laanspac@engineer.com) We can send either a DVD or a VHS tape copy.
Friday, February 25, 2005 0:07 AM CST
February 24, 2005 Day + 38
“……for I have learned how to get along happily whether I have much or little. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everything with the help of Christ who gives me the strength I need. But even so, you have done well to share with me in my present difficulty.” Philippians 4: 11-14
Dearest Friends,
In some ways it is very amazing to see that we are almost at day + 40 post transplant, in other ways it has seemed like an eternity. After getting through the initial transition out of the hospital, we have found that the days are very full, but at times also seem very long. Perhaps that is because they can be long, when your sleep is interrupted at least 5 to 6 times a night.
In some of those late night moments, I have found myself contemplating Paul’s situation as he described above. It is funny how you ponder things like:
• Isn’t it amazing how going through a transplant can lead to both living with “plenty” and living with “little.” On one hand, we are exposed to some of the most complex of medical worlds. On the other, we are living in the same 3 sets of clothing every day. Personally, I’m starting to like not having to think about what I am wearing. There is a part of me that would like to simplify living when I return home, but the rest of the world might wonder about our attire.
• I wonder if Paul only wrote during the “good” moments. Did he ever fell like he wanted to BOLT…………? Did he miss being home? Was he really so at peace with his relationship with Christ that he didn’t care if he had a shower? Hmmmm
• Isn’t it amazing how children can be far more content in whatever their situation than adults seem to manage. As evidenced by the pictures, more often than not, Daniel and Thomas are very content in their situation. Maybe that is why Jesus loved children so much. They just seem to get it……………..What happens when we grow up?
• Regardless, it is clear that our family and Paul do have one great thing in common. You, who are out there praying and hanging in there with us, “have done well to share in our present difficulty.” That is truly a blessing!!!!
So much for the pondering, I know what you really came for is Daniel’s update.
We saw Dr. Orchard today and continue to be in his fan club. The good news is that Daniel’s platelets (blood clotting cells) continue to remain stable, indicating that he is producing them on his own. That means, less transfusions, which is wonderful. It also means that when he fell of the bed today and hit his head on the night stand that the “Bob Kelly knot” stopped at the size of a large marble instead of a baseball. His fall provided an element of surprise this morning, as we waited to see the results. It didn’t take long….Thomas thought he looked a bit like a unicorn.
Daniel continues to struggle with eating. Dr. Orchard is still waiting a bit longer to see what will happen, but if Daniel doesn’t eat soon he will need some help. They are considering doing a “scope” of his stomach and placing a feeding tube if he can’t start on his own. They don’t care what he eats. He just needs to start, so things pick up over time. So, we made a trip to the grocery store and let Daniel pick out what he thinks he’d like to try. It was a mother’s nightmare……………..gummy bears, four kinds of sugar cereal, Spagetti O’s, donut holes, Sport’s drink, Fruit by the foot, corn dogs, and don’t forget the SpongeBob crackers………….and a kid’s dream.
His MRI revealed some mild progression of his disease during the transplant process. That was not unexpected. We are not certain how that will impact Daniel’s ability to function and are hopeful that therapy will help him compensate for any of the losses he has experienced.
So, overall the report continues to be positive and as expected, for which we are thankful.
Please continue to pray for:
1. Daniel’s desire and ability to eat and swallow.
2. That his course continues to remain complication free.
3. Thank God for all of the assistance and visits we have received from home and from our CarePartners (Sue is in a picture tonight, Thomas was thrilled with the pot roast she provided!)
4. Continue to pray for our other bone marrow friends, Cory, Andy, Matthew, Roman, Titus, and any others that may have arrived.
5. We also ask for prayers for a friend from our church, Tom, who is in the hospital. We do not know the details of his hospitalization, but pray for his healing and peace.
6. Please also pray for my parents. Dad was in the hospital last week and is now home. He is doing well, but will require surgery March 9.
7. Finally, we pray that regardless of your situation (or ours) that we will all find peace in the presence of Christ our Lord.
Goodnight,
Sylvia, Larry, Thomas and Daniel
Click Here For Feb 24 Pictures: Feb 24 Pictures
Tuesday, February 22, 2005 0:07 AM CST
February 21, 2005 Day + 35
Hello to All,
We have not updated the website for a couple of days. For all of you faithful followers, we apologize. We hope you will continue to visit regularly and we will try to be a little more consistent. It seems that the time it takes to care for Daniel (and keep the two rooms picked up) is time consuming. Enough of the excuses……………..here it goes.
We went into the weekend with quite a bit of good news and for the most part that carried us through the days. Daniel received platelets on Saturday, but when his counts returned after they had infused, we found out that he really didn’t need them. His count was high enough that it looked like he might be beginning to produce some of his own platelets, as well. He did not receive any transfusions Sunday and today in clinic, his counts were still holding relatively well. We may be able to spread his transfusions to one unit of blood and two units of platelets a week…………….that would be WONDERFUL!!! Time will tell.
We got a bit stir crazy by Saturday evening, so ventured out briefly on Sunday. We visited the local Christian bookstore and made a midday trip to Appleby’s. We noticed that Daniel seemed to be a bit slower, but he seemed to enjoy the time out. We were happy to see Pastor Becky and Dan later in the evening yesterday, as well.
Unfortunately, Daniel did have a rough night. He awakened about 4 am with vomiting.
We were surprised at the amount, since he still doesn’t eat. As the morning progressed, he became increasingly uncomfortable. He had abdominal and back pain, which were rather worrisome, but remained fever free so we continued to watch him until the clinic opened. Upon arrival to the clinic his pain subsided, so we really don’t know what happened. They believe he may have a mild viral infection and are just watching at this point. He slept most of the day…………..awakened GRUMPY, but after hitting heads with me for about 2 hours………..he had a change in attitude and finished the evening in great form. (I guess that means, I still have the harder head!!)
The best event of the weekend was Larry’s first video production. He has made a video of Daniel’s journey to share with family and friends. I have had an opportunity to preview it and even though I may be a bit biased…………….it is FANTASTIC!!!
If you are interested in receiving a copy, e-mail Larry at the author address below with your US postal address. We will send it out on DVD without charge.
Thank you for your continued prayers…………….for now we need patience and perseverance.
Click Here For Feb 21 Pictures: Feb 21 Pictures
Sylvia
Friday, February 18, 2005 0:39 AM CST
February 17, 2005 Day + 31
Hello again to all our web friends,
Daniel is now one month post transplant and we are pleased to report that all continues to go well. This week he has restarted his visits with occupational, speech and physical therapy. His teacher has started coming again and his physician’s continue to be amazed at his progress. Today we again crossed some major milestones, including:
• Daniel had his 30 day post transplant MRI of his head. We do not have the results, but were once again amazed at his determination and courage. The other two MRI’s were done under anesthesia and today’s was scheduled to be done with sedation. Daniel decided he didn’t want to go to sleep and was able to complete the entire 45 minute test, without moving!!! We were VERY proud of him. We don’t expect anything new to be determined from this MRI. Usually, they would use it to confirm that the inflammation was gone, but Daniel’s pre-transplant MRI already showed some halting of the disease. The doctor’s aren’t sure what the reason is………………..but of course we know that it was one of God’s blessings in this miracle in the making.
• We were given the results of the blood tests that determine what bone marrow is growing, Daniel’s, Thomas’s or some mix. The physician was happy to share that Daniel’s cells are 100% from Thomas’s marrow. That is the best possible situation.
• It appears that Daniel’s platelet count is beginning to stabilize. For the next few days we will only have to go to clinic every other day. On Monday, they will see if that can be spaced even further.
• Finally, Daniel has been testing his tummy. Yesterday and today he was able to eat a little without vomiting. His diet isn’t exactly great, but right now the key is getting it in and to stay down. So far, he enjoys cereal (Fruit Loops and Cinnamon Toast Crunch), macaroni and cheese, and popcorn. Tonight he ask how much longer it would be before he could be “unhooked” for the whole day. I told him it would be after he was able to eat more with a bit more healthy food. His only question was “ I don’t have to eat broccoli do I? I don’t like it!!”
• Daniel would add that today’s highlight was winning “black-out” during the bingo grand prize round. He was SO excited!!!
So tonight we close with praises that God continues to work a miracle in Daniel. We even gently posed the possibility of returning to Cedar Rapids at 60 days post transplant. The doctor didn’t exactly say yes, but he didn’t say no, which is good enough for us right now.
• Thank God for His healing presence in this situation.
• Pray for all the other children undergoing transplant, but if your time is limited please pray specifically for Cory. He continues to have severe complications and is requiring intensive care.
Click Here For Feb 17 Pictures: Feb 17 Pictures
Sylvia, Larry, Thomas, and Daniel
Monday, February 14, 2005 11:38 PM CST
February 14, 2005 Day + 25 through +28
“A merry heart does good, like medicine, but a broken spirit dries the bones.”
Proverbs 17: 22
Dear Friends,
We continue to be amazed at Daniel’s progress. Given what he has been through, everyone consistently seems impressed at his overall appearance. The most common comment from any given staff in the outpatient clinic is, “Wow!! He looks good!!”
As we scanned through the pictures from the weekend and thought back to the remarks on the webpage, it struck me that Daniel looks good because more often than not he has a “merry heart.” When he is happy, the twinkle in his eyes, the smile on his face, and the giggle that often follows, quickly draw your attention away from some of the other physical findings and what remains is joy. Daniel may be living evidence that “laughter is the best medicine.” (along with a few other medical breakthroughs)
Don’t get me wrong. Daniel doesn’t smile all the time. In fact, there are times when he is rather ornery. We tend not to take pictures at those times because frankly, we are too busy jumping through hoops. Those are usually the times after he has received Benadryl, which results in the “Benadryl Blues” after he awakens, when he is tired, or immediately before he gets sick to his stomach. Fortunately, those times are brief and what is most amazing is how tough Daniel remains. He seems to have learned to live in the moment.
Usually, we can move through the tough spots if we can find something to laugh about.
(He finds it particularly amusing when I halt and remind him that I am NOT his slave. It’s as if he were testing to see if I remembered.)
I read a book, recently, that talked about joy. It pointed out that joy doesn’t keep sadness from happening, and it doesn’t protect us from pain, disappointment or fear. Joy grows in hope. If you follow Daniel’s example you will see that by living in the moment, the tough times pass, there is hope for the future, and regardless of what is going on in your life you can have a “merry heart” and joy.
We hope today’s pictures will make your heart “merry” as well
Click Here For Feb 14 Pictures: Feb 14 Pictures
Happy Valentines Day!
Sylvia, Larry, Thomas and Daniel
P.S. Here are the prayer requests and praises.
1. Prayers for Brock Suthers and his family…………..we pray his surgery goes well and that his recovery is rapid and complication free. We pray his family will find peace in God’s presence.
2. Praises that Cory, the other transplant patient, seems to be doing a bit better. They have located his problems and the treatment seems to be helping. His counts are recovering, as well.
3. Praises that the 2 children from the same family are both doing better. God IS GOOD!!. One of the children was facing dialysis, but seems to be turning around without it. The second child was facing a second transplant, but they are hopeful that may not be necessary. They will find out Monday, so pray for his recovery,.
4. The two other boys we knew both seem to be doing well. They are 12 and 5.
Thank you for your continued prayers. It is amazing to see these miracles in the making. We wish you could see them first hand because your prayers are being heard.
Friday, February 11, 2005 11:01 PM CST
February 11, 2005 Day + 25
“New Moon”
This morning I noticed that there was just a sliver of moon in the sky. It seemed that Daniel’s journey was following that same pattern of beginnings and endings, as he moves through the stages of his diagnosis and transplant. We are once again at a “new moon” of sorts, as we transitioned to outpatient life.
Daniel’s days now start with a flurry of activity. He is still receiving all of his nutrition through his Hickman line, but it is all given over 12 hours at night so he has more freedom to move during the day. So, our first activity is to stop his nutrition and start a medication he receives through his Hickman three times a day until that can also be changed to oral. We have delayed that transition because by all reports that drug is just plain “nasty” to take and it is extremely important. We choose to move more slowly until he is able to eat.
After we get his IV’s all straightened out, he is hoisted out of bed and essentially out the door. He is off to clinic for blood work and a quick check by the physician or nurse practitioner. We have only done this two days and are happy to report we are becoming more organized. The first day we were 45 minutes late. Today we were only 5 minutes late, which was remarkable since I misread the clock and didn’t get up until 40 minutes before his appointed time.
The end of this week he has gotten a bit of a break from therapies and school, but will begin those again next week. He will likely go from clinic to rehab, then return to the house to meet his teacher.
Today’s pictures are after our return from clinic. He had free time to play, uninterrupted by the hospital routine (although I think he would like a playmate that doesn’t negotiate pill taking and play time). As you can see, he seems to be doing quite well and has amazed us with his stamina. He looks forward to Thomas’s return.
We also should report that, Cory, the other child with ALD we have asked you to keep in prayer, is doing better. His bone marrow is starting to return and they have identified the source of some of his problems, which allows treatment. His family seems happy with his progress.
So, as we move into this “phase of the moon” we thank you for all of your continued interest and prayers. We continue to thank God for the miracle we have witnessed and ask that He continue to watch over Daniel. We pray that Daniel will continue to be without complications and that the rehab will help him learn to compensate for some of the changes he has experienced.
Click Here For Feb 11 Pictures: Feb 11 Pictures
Thank you,
Sylvia, Larry, Daniel and Thomas
Wednesday, February 9, 2005 6:31 PM CST
February 8, 2005 Day + 22
As they say...you miss a day, you miss a lot. The following was supposed to be posted at the website yesterday, but in the rush of all that is going on, I managed to goof it up. So here is Sylvia’s entry from yesterday… (Larry)
As promised, tonight we have pictures of Daniel "escaping" the confines of his room. Interestingly, it took a bit of coaxing the first time out. After talking about leaving for weeks, he decided he didn't want to go after all. You can only imagine our internal response, but as always, rather than letting him see our chins hit the floor we gritted our teeth, smiled, and started problem solving. We suspect it may have been a combination of issues as a result of the mask he must wear, looking different, the "germ" discussions we've had to date, and just generally not knowing what would happen. Fortunately, the physical therapist brought a great bike, we had a back-up "prize plan" for a day when we needed it, and Larry looks great in a mask!! As you will see,
it ended up being GREAT fun! It was good that he was still connected to his IV because that kept him within the hallway speed limit. He took two additional walks today, as well. It all resulted in his first afternoon nap in quite some time. Thomas accompanied him on his final walk of the day and looks forward to being together in one place (as well as time away from the hospital).
On his final walk of he evening, Daniel stopped to look at a picture in the hallway. It was very pretty, with a waterfall, fall colored leaves and sunshine. It was titled "GOALS." At the bottom was this quote:
"You measure the size of the accomplishment by the obstacles you had to overcome to reach your goals." Booker T. Washington
If that is true, then thus far Daniel is quite accomplished ... he has remained strong, brave, persistent, and fairly cooperative throughout this process. Someday, maybe he will understand.
There is a part of us, that even as we celebrate Daniel's accomplishments, realizes that we are leaving behind many whose accomplishments will be even greater. I think some refer to the feeling as "survivor's guilt," but I don't know that guilt is the correct emotion. It is more saddness and heartfelt concern. So, as we move to the next phase we ask that you continue to pray furvently for those we leave behind...
1. An 18 year old ALD child who is Day + 12, with worsening pneumonia. He is too early to show any sign of bone marrow recovery and an infection at this stage is threatening.
2. The family with two children is facing huge challenges with both of them. One child is possibly developing complications with both his liver and kidneys. They may be facing dialysis. The other child appeared to be doing well, but developed a viral infection and now is struggling to recover his bone marrow. They may need to re-transplant him. Both parents are here around the clock, their faith remains strong, but they are clearly worn down.
3. A 12 year old boy with leukemia, who is now Day +4.
4. A 22 year old boy with ALD who is on Day + 128 and now faced with a transfer to a rehabilitation facility. His outcome is yet to be determined.
5. For all those whose stories we don't know, including the child Thomas saw last night.
Tomorrow we will leave for Ronald McDonald. We PRAISE GOD for the blessings we have received and thank Him for His presence and healing hand over Daniel. We pray that He will continue to watch over Daniel, Thomas, Jen and the rest of the family, and that this next phase will be equally uneventful.
We have loved your notes and continue to share them with the boys.
Click Here For Feb 8 Pictures: Feb 8 Pictures
Sylvia
Tuesday, February 8, 2005 4:50 AM CST
February 7, 2005 Day + 21
Tonight we don’t know whether to hold our breath or celebrate. Daniel’s “fast track” pace created a bit of a dilemma the end of last week and over the weekend. His counts were returning rapidly, but no plans had been started to make the next move from the hospital. We found out last Thursday that they wanted to possibly move us to another unit in the hospital over the weekend or at the beginning of this week. We felt torn………on one hand we understand the stress of being on the outside waiting to get into the transplant process, but were worried about another transition for Daniel and the rest of the family. I admit it……….I was particularly distressed by the need to move up a floor, not down two and out the door. We began advocating for some rapid discharge planning and they immediately started switching his medications to oral. That became a bit complicated by Daniel’s occasional nausea and vomiting, along with his lack of interest in taking pills (or anything else that had to go through his mouth).
Today, we are THRILLED to report that two things happened:
1. Daniel took ALL of his pills today. That is a total of 25 PILLS!!!! He was VERY proud tonight. Even when he did get ill in the middle of the day, he kept working at getting them all taken. A remarkable accomplishment.
2. The attending physician agreed to let us return to Ronald McDonald house, even though Daniel is not on his oral cyclosporine, yet. They will let us give that through his Hickman catheter three times a day. We will continue his nutrition in that manner, as well, until he can begin eating. The nutrition can run overnight.
As long as all goes well tomorrow……………..WE WILL BE DISCHARGED, BACK TO RONALD MCDONALD HOUSE ON WEDNESDAY, FEBRUARY 9th……………
We did not have the camara with us tonight, but when Daniel calculated tonight that meant one day and two nights, he had a moment of celebration that can not be topped!!
Daniel wants me to report that for Lent, he is giving up the hospital!!!!!
So, I guess tonight we WILL CELEBRATE and we invite you to celebrate and thank God with us. Daniel will probably leave the hospital on Day + 23.
Our prayers for now are:
1. Continue to pray for the other families on the BMT unit. Many of them are struggling, but it seems that they also are improving slowly. We know that your prayers for them are helping.
2. Pray for a child Thomas saw tonight at an event sponsored by the child life team for the children’s hospital. Thomas described him as “looking like he might have been hit by a car.” He apparently had some braces on his torso and his arms were braced at a 90 degree angle to his body. Thomas was VERY worried and saddened by his appearance and ask we ask you to pray. He thinks he was about 9
3. Prayers of thanksgiving for Daniel’s progress. We also pray that he continues to not show any signs of Graft vs. Host disease and that his system will heal so taking the medications and eating aren’t so hard.
Thank you all for your unending prayers and comments on the webpage. We continue to watch for them daily. We know it takes your time and effort, but it seems that every time we are struggling a bit, there is a message there that helps us get through.
COMING TOMORROW……………We think pictures of Daniel’s first time out of the room in 32 days!!!!!
Click Here For Feb 5 Pictures: Feb 5 Pictures
Sylvia
Saturday, February 5, 2005 10:25 PM CST
February 5, 2005 Day + 19
DANIEL UNPLUGGED!!
Hello to all of our website friends. Daniel is doing extremely well and continues on the fast track, now with the acknowledgement of the physicians. For the last two days his white blood cell count remained at 400 cells, but today it took a BIG jump to 1100 cells.
If he continues at this rate, the staff will either move us to another unit or the Ronald McDonald house sometime next week. We are advocating for one move…..OUT OF HERE!!!! So, in an effort to move toward discharge, Daniel has experienced some new things……………he has to take all of his medicine by mouth and they will begin cycling him on and off his intravenous nutrition. In the end he will still be hooked up at night, even after discharge, until he can eat enough to support himself, but we will all be located at the same spot. It will be one more step in the direction of Cedar Rapids.
Thomas continues to do well. He will be attending yet another Timberwolves game tomorrow. He will be returning to Cedar Rapids next weekend for a brief visit with his dad and for a birthday party. He is very excited about seeing his friends again. He
will return to be with us on Sunday. This weekend he enjoyed the company of Jennifer, Dan and Sara.
Jennifer was able to join us from North Carolina. We are wondering if she was instrumental in brining the Spring-like weather with her. Daniel and Thomas were very happy to see her (as well as Larry and I). It was a treat for her to see Daniel at a time of positive progression.
Tonight, we are sharing pictures of Daniel over the last couple of days, but the highlight is clearly Daniel unplugged. He could walk away from his IV pole for the first time in 29 days. He hasn’t lost his sense of humor……….he got ½ way across the room and came to a quick halt proclaiming “I’m Stuck”……..and then laughed. We hope this gives you as much joy, as it gave Daniel and the rest of us.
Thank you for your continued prayers………….THEY ARE BEING HEARD and we do believe that each day we experience a miracle as we watch and care for Daniel.
Click Here For Feb 5 Pictures: Feb 5 Pictures
Sylvia, Larry, Thomas, and Daniel
Wednesday, February 2, 2005 2:19 PM CST
February 2, 2005 Day 16
PRAISE GOD, From whom ALL Blessings Flow!!
Today, Daniel's white blood cell count was 0.3, which means it is now 300. (For our engineer friends, that means you can now start doing percentages and graphs) This is the first "sighting" of Thomas's bone marrow starting to make itself at home and a HUGE step toward our next milestone…………………..getting to go out of the room. In general, once the white cells come back it results in all sorts of wonderful things:
* The risk graft failure begins to disappear
* Mouth sores become less of a problem
* The risk of life threatening infection drops. It won't go away for quite some time after we leave the hospital, but it decreases.
* It is a huge emotional boost to the family.
So for today, Praise God for His continued watch over Daniel and His healing hand at work. We are thankful for the exceptional care Daniel has received here and all of the continued prayers and support from all of you.
Please continue to pray for the other children and families here. Most of them are umbilical cord transplants, which tend to take longer to recover. We pray for their continued healing, as well. Also, please pray for a child from my hometown of Leon, Iowa who needs a transplant, but has been unable to find a donor. Please pray that the right source will be found quickly. For Daniel, the concern will now be whether he will develop graft vs. host disease, as his new marrow grows. I continue to remind the medical team that Daniel is a bad learning experience, so they need to look elsewhere………unless of course they would like to learn about the power of God.
Thank you all
Sylvia, Larry, Thomas and Daniel
Click Here For Feb 2 Pictures: Feb 2 Pictures
As we indicated in a recent journal entry, Larry and I have continued to be distraught by what we have learned as a result of the insurance problems. Daniel is only an example of a MUCH larger problem. In his case, we were able to find a solution. In others, children and adults are being harmed and in some cases are dying, as a result.
This is a difficult situation. We are NOT political activists and don't really desire to struggle with what seems an insurmountable problem. "Health care reform" seems to be similar in proportion and likelihood to something like "world peace." We now recognize how naïve we were thinking that the insurance process would be reasonable and successful. How naïve would it be to think that Daniel's example might encourage someone with more political knowledge and power than we have to encourage reform?
The most difficult part is that we have now been exposed to the pain of the people impacted by these larger health care issues. We have been faced with a choice. Be thankful and walk away because Daniel has been fortunate enough to get the care he needed, or acknowledge the problem and take a stand, hoping the right people will hear.
"You can blame people who knock things over in the dark, or you can begin to light candles. You're only at fault if you know about the problem and choose to do nothing."
~Paul Hawken
We are including a link today that will take you to a letter we have written. It explains the legislative / insurance issues that impacted Daniel. If you are interested, take a look. I would particularly encourage you to do so if you are covered by a self-funded insurance plan.
For those of you who only desire to remain abreast of Daniel's situation and progress…….We continue to thank you with all of our hearts. We feel blessed by your presence and prayers. We DO NOT want to scare you off with this message. We decided to include the letter via a link rather than in the journal, so you may continue to enjoy the website for it's updates.
For those of you who like us, are haunted by the problem Daniel faced, not because of Daniel but for the other children who may not be so lucky………..feel free to utilize the information we have learned and "begin to light candles." Go to the following link: Light The Candle
Sylvia
Sunday, January 30, 2005 10:25 PM CST
January 30, 2005 Day + 13
“The Lord is good, a stronghold in the day of trouble, and He knows those who trust in Him.” Nahum 1: 7, 8
Daniel’s droopy days are understandable, but are a bit more difficult for those of us sitting close and watching. Larry and I have not felt very rested in the last several days and honestly were becoming……..irritable. Last night, as I was reading in my Women of Faith Bible, this is the verse where I ended. This day of study, talked about other people in the Bible who had to pray and wait, sometimes for very extended times. The bottom line message was not to give up on God…..to keep hoping…..trusting…..believing. The final quote was: “You are one day closer to your miracle.” Even though I was still a bit behind in my reading, I decided it was time to stop and rest in that message.
Today was a MUCH better day. It seems odd that sometimes we pray for his counts to go up and sometimes we pray for them to go down. We were praying last night that Daniel’s red blood cells would be low enough for him to receive blood. He was able to get blood today, which helped dramatically. He spent most of the day up playing Math Blaster on the computer. His doctor agreed to give him blood a little sooner, so he doesn’t have to get so droopy. Larry and I actually took a nap in the room, while Thomas played with Daniel. Needless to say, we are much nicer people now.
So I quess the message of the day is whatever you are going through….hang in there, don’t give up hope. Keep believing. God will get you through.
Sylvia
P.S. Please DO NOT panic when you see today’s pictures. The “eye changes” you are seeing are only for fun. They were pretty goofy.
Click here to see today’s pictures: Jan 30 Pictures
As we indicated in a recent journal entry, Larry and I have continued to be distraught by what we have learned as a result of the insurance problems. Daniel is only an example of a MUCH larger problem. In his case, we were able to find a solution. In others, children and adults are being harmed and in some cases are dying, as a result.
This is a difficult situation. We are NOT political activists and don't really desire to struggle with what seems an insurmountable problem. "Health care reform" seems to be similar in proportion and likelihood to something like "world peace." We now recognize how naïve we were thinking that the insurance process would be reasonable and successful. How naïve would it be to think that Daniel's example might encourage someone with more political knowledge and power than we have to encourage reform?
The most difficult part is that we have now been exposed to the pain of the people impacted by these larger health care issues. We have been faced with a choice. Be thankful and walk away because Daniel has been fortunate enough to get the care he needed, or acknowledge the problem and take a stand, hoping the right people will hear.
"You can blame people who knock things over in the dark, or you can begin to light candles. You're only at fault if you know about the problem and choose to do nothing."
~Paul Hawken
We are including a link today that will take you to a letter we have written. It explains the legislative / insurance issues that impacted Daniel. If you are interested, take a look. I would particularly encourage you to do so if you are covered by a self-funded insurance plan.
For those of you who only desire to remain abreast of Daniel's situation and progress…….We continue to thank you with all of our hearts. We feel blessed by your presence and prayers. We DO NOT want to scare you off with this message. We decided to include the letter via a link rather than in the journal, so you may continue to enjoy the website for it's updates.
For those of you who like us, are haunted by the problem Daniel faced, not because of Daniel but for the other children who may not be so lucky………..feel free to utilize the information we have learned and "begin to light candles." Go to the following link: Light The Candle
Sylvia
Saturday, January 29, 2005 11:40 PM CST
January 29 2005 Day 12
Droopy Day
Part of yesterday and today have been very droopy days for Daniel. His energy level has dropped dramatically and so far today he hasn't wanted to even sit up in bed. He reports that he is "too tired." His blood counts are low. Today he needed platelets and we are hoping he gets a unit of
blood to perk him up tomorrow. His blood pressure is now creeping up, so he is going to have to take some meds by mouth (which he really doesn't want to do).
Daniel is still tracking what is going on closely. He shared today that his "nerves were peeling" so Thomas had to save him by giving him his bone marrow. He stated that he hoped his blood count would come back soon......he wants the white ones and the red ones to come back....................but he really doesn't want any blue ones because then he'd be a flag. That was followed by a brief giggle and a nap.
We would include pictures, but they would be limited to sleeping, sleeping, or more sleeping..............we'll see what tomorrow brings.
As we indicated in a recent journal entry, Larry and I have continued to be distraught by what we have learned as a result of the insurance problems. Daniel is only an example of a MUCH larger problem. In his case, we were able to find a solution. In others, children and adults are being harmed and in some cases are dying, as a result.
This is a difficult situation. We are NOT political activists and don't really desire to struggle with what seems an insurmountable problem. "Health care reform" seems to be similar in proportion and likelihood to something like "world peace." We now recognize how naïve we were thinking that the insurance process would be reasonable and successful. How naïve would it be to think that Daniel's example might encourage someone with more political knowledge and power than we have to encourage reform?
The most difficult part is that we have now been exposed to the pain of the people impacted by these larger health care issues. We have been faced with a choice. Be thankful and walk away because Daniel has been fortunate enough to get the care he needed, or acknowledge the problem and take a stand, hoping the right people will hear.
"You can blame people who knock things over in the dark, or you can begin to light candles. You're only at fault if you know about the problem and choose to do nothing."
~Paul Hawken
We are including a link today that will take you to a letter we have written. It explains the legislative / insurance issues that impacted Daniel. If you are interested, take a look. I would particularly encourage you to do so if you are covered by a self-funded insurance plan.
For those of you who only desire to remain abreast of Daniel's situation and progress…….We continue to thank you with all of our hearts. We feel blessed by your presence and prayers. We DO NOT want to scare you off with this message. We decided to include the letter via a link rather than in the journal, so you may continue to enjoy the website for it's updates.
For those of you who like us, are haunted by the problem Daniel faced, not because of Daniel but for the other children who may not be so lucky………..feel free to utilize the information we have learned and "begin to light candles." Go to the following link: Light The Candle
Sylvia
Friday, January 28, 2005 0:09 AM CST
January 27, 2005 Day 10
Dear Friends,
The biggest clue to Daniel's condition today was the greeting we received from his doctors in the hallway this morning. Larry and I had stepped out of the room while he was playing with the physical therapist, during which time the doctors visited. They saw us in the hallway afterward and were laughing at their own creativity. Their primary goal entering the room today was to have a "knock, knock" joke for Daniel…….so they made up their own joke on the way into the room. They were SO excited to share it with us…………….and that was the ONLY news they had. He is doing SO well there is nothing to report. In case you are wondering, Daniel did not think the joke was funny.
The highlight of his day, was the boxes he received from his second grade friends at All Saints. Daniel and our family are SO blessed to be part of the All Saints Community. Words cannot even begin to express our gratitude. Returning to school continues to be his greatest hope and desire. Today's pictures show Daniel's day, highlighted by the packages from All Saints second grade.
Jan 27 photos
May God Bless ALL who have and will visit here.
Sylvia
Tuesday, January 25, 2005 11:54 PM CST
January 25, 2005 Day + 8
You are probably familiar with the saying “no news is good news” and I think that best describes Daniel’s world in the last couple of days. He really is doing extremely well for going through a bone marrow transplant and for that we PRAISE GOD!!!!! Yesterday they checked Daniel’s white blood cell count for the first time and it was less than 0.1 (or less than 100 cells), which we thought was great news. That confirmed that they had completely wiped out his marrow (not that we really thought they hadn’t but it is nice to see in black and white). Now we wait for the return of his counts.
Daniel continues to participate in the different therapies and school if he is feeling well. On down days, they just let him rest. Monday he rested all day, but today he was up the entire day and didn’t miss any sessions. I think the variation in his energy level is quite normal and the rest of us will just need to go with the flow. I do believe that the doctors are starting to believe me when I repeat to them each day “ Don’t forget, Daniel is on the fast track.” They used to laugh, but today they seemed a bit more receptive.
We find now that we are a bit more aware of the world around us than we were last week. In some ways that can be comforting, in others it can be distressing. Tonight we are asking you to extend your prayers a bit..............beyond us to the community we are observing here and on our website.
Please pray:
1. For the child who is at the University of Iowa for a transplant and left a note on our webpage. We pray that God will let His healing presence known to them and provide them with the peace we have experienced as a result of your prayers.
2. For the other children and families on this unit, many of whom have situations that seem far more complex than ours. One family has two children being transplanted at the same time. They are about 3 days ahead of us, but seem to not be fairing quite as well. Their home is the West coast, their family is split and both parents are staying here day in and day out. I have talked with Mom briefly and I know she is terrified. Please pray for them. A second family is from the South. They lost one child to ALD during transplant and now are just starting the process with a second son. Please pray that God will be with them and calm their fears.
3. There is a family from Taiwan at the Ronald McDonald house. All 3 sons, all under the age of 11, they believe have ALD. One is too advanced to transplant but the other two are being evaluated. I can not imagine the combination of a different country, different language, the disease itself, multiple children involved, and the prospect of a transplant.
We also thank God for the continued blessings we receive.
1. Thank you God for the exceptional physicians and staff here. It is clear that you are present with them and are guiding them. Continue to lead them in the direction of your will. Work through them.
2. Thank you God, for all of you who continue to keep us close, even though this journey seems to be long. We are so thankful that God continues to bless us with each of you and your interest in Daniel.
3. Thank you God for helping us to continue to find peace, joy, laughter and hope in our situation.
In closing, I would like to add one last note. Many of you have been asking how you can help. Daniel’s situation with the insurance coverage brought many issues to the surface that we would not have noticed if all would have gone well. It has come to our attention that our situation is not all that unusual. In fact, there are children out there that never make it to transplant. That knowledge makes it difficult for us to just turn our backs and walk away. In the next few days we will be using our update on the website to give you specific ways that you can help us, help someone else. Thank you for continuing to watch.
Sylvia, Larry, Thomas and Daniel
Here is the link for the pictures for today, Tuesday, January 25, 2005: Jan 25 Photos
Sunday January 23, 2005
Day 6
This is just a brief addendum to yesterdays message. This has been relatively restful day. Daniel is doing well. He was up at 7:00am, ready to watch what has become his favorite DVD - outtakes from the Veggie Tales video "Jonah." Then he challenged Larry to a couple of games of UNO attack. He has lost just about all of his hair, but seems pretty unbothered by it.
Thomas met Scott, one of the "Care Partner" volunteers that is helping us out. Scott stopped by the Ronald McDonald house this afternoon to spend some time playing with Thomas on the basketball court. This is yet another example of how God continues to bless our family with care and support.
We ask for your prayers that Daniel continues to progress rapidly toward recovery; that he remains comfortable and secure in God's love and the knowledge that so many people care for him.
Today's pictures; Daniel hiding under his blanket and Thomas with some new friends from the BMT unit:
laanspac.smugmug.com/gallery/369544/1/14710675/Medium
Larry
Day 5
Today Daniel reminded us of a verse from Proverbs. It is Proverbs 15:13….
“A glad heart makes a happy face; a broken heart crushes the spirit.”
It was clear as he started his day, that this weekend would be punctuated by the loss of his hair. The early tell-tale signs were on his pillow at the start of the day around 6 am, and as the day progressed it seemed that the process was hastening.
Daniel has been aware that he would lose his hair. What we didn’t know was how that
would take shape in him. We know it can vary from rapid, almost complete loss all at once, to handfuls coming out over a few days, to a staff assisted shave. I reminded
Daniel that it looked like his hair would begin falling out today and ask him if he wanted it cut. He told me that he wanted it to come out on it’s own………so be it.
What we found as the day went on was that in some ways seeing his hair fall out was impacting us more than Daniel. Both Thomas and I were fighting the tears, even though Daniel was having a great day. I suppose it was the visible reminder of what is happening………………not unlike what I see in at work on a daily basis. You can tuck a lot of things away in the hidden places of your mind and heart, but hair loss is pretty obvious.
As you will see from the pictures…………..Daniel took a different approach. He decided to “assist” the process by pulling out his hair (it gives a whole new meaning to the phase “I’m pulling my hair out……”). We put it in a bag and then we had an unexpected surprise from our Care Partner volunteer……………SNOW!!! She decided
since we couldn’t go out to play in the six inches here that she’d bring it to us……….
Look at the results in the pictures…………they speak a thousand words.
A “glad heart” can get you through the hard points and joy can present itself in some pretty unexpected ways. (thanks to our care partner volunteer, Sue) Today it seems, that God gave us the gift of laughter as the antidote to today’s changes.
So, Daniel’s (and our) hope and prayer for each of you tonight is that you too will find the gift of laughter so that your hearts may be glad and your spirits lifted, regardless of the trials you may be facing. (maybe the new pictures will help)
Sylvia
P.S. Haircut Cathy…………Daniel thinks he should still get the mini M&M’s even though he cut his own hair. Do you want us to send proof?
Here are the pictures from today, January 22
laanspac.smugmug.com/gallery/367716/29/14631684/Medium
Note on email updates: Larry is updating the email list that the updates are sent to. If you aren't currently receiving updates via email but would like to, drop a note off to Larry at laanspac@engineer.com.
Tuesday, January 18, 2005 11:09 PM CST
Tonight's journal entry will be short again, and not nearly as articulate as usual. Sylvia generally writes the entries, and she is a far better writer than I am!
Daniel is doing fine, although he remains pretty tired a good part of the day. He was a little nauseous earlier in the day, and the medication he gets for that makes him drowsy. Also, I think everyone is simply exhausted after getting through Day 0.
Our days have been hectic and filled with actitity and dramatically changing emotions. I ask for your prayers for peace and serenity as we move on from transplant day. I ask for your prayers that we will be able to get into a more scheduled and structured life; in particular for the boys sake. Finally, I pray for rest for Sylvia. It is hard to imagine that one individual could have so much energy. The boys are incredibly fortunate to have her as their caregiver as well as their mother.
I will close tonight with the bible verse of the day that I heard on the local Northwestern College radio station up here. It is really my prayer for Sylvia tonight...and for all of her days and nights on this journey; From Psalm 20:
"May the LORD answer you when you are in distress;
may the name of the God of Jacob protect you.
May he send you help from the sanctuary and grant you support from Zion.
May he remember all your sacrifices and accept your burnt offerings.
May he give you the desire of your heart and make all your plans succeed.
We will shout for joy when you are victorious and will lift up our banners in the name of our God.
May the LORD grant all your requests."
Have a wonderful day,
Larry
Here are the pictures from "Day Zero":
laanspac.smugmug.com/gallery/362506/1/14417682/Medium/Day0/
Monday, January 17, 2005 9:37 PM CST
Evening of Day 0
This is a quick entry after a long day filled with many blessings including:
A successful harvest of "stem cell rich" marrow from Thomas.
Thomas' rapid recovery and minimal discomfort.
Daniel's relatively reasonable tolerance of the treatment to date.
The transplant proceeding as planned with only a minor reaction afterward.
The support of Pastor Kory and our friends Dan and Sara from Hillside Wesleyan church.
The overwhelminng prayer support from All Saints school, Hillside, and all of the other family and extended community that has surrounded us.
As we now enter a new phase of watching and waiting, we will continue to keep you posted on Daniel's progress.
In the meantime, we pray that you will experience the awesome peace and power of God in your daily lives.
Sylvia - Here are the pictures from "Day Zero":
laanspac.smugmug.com/gallery/362506/1/14417682/Medium/Day0/
Sunday, January 16, 2005 10:47 PM CST
January 17, 2:30pm Update:
Thomas had an outstanding procedure this morning and is doing absolutely wonderful. He is in a room on the same ward as Daniel and is currently playing PS2 basketball with Pastor Kory and is able to beat PK. I listened as one of the doctors asked Thomas if he had any pain. Thomas said yes, his IV bothered him. It was wonderful to hear that the thing that bothered Thomas the most was not the procedure itself but rather the preparation. It has to be another example of prayers and God at work to bring Thomas through the procedure so well.
The current plan has Daniel’s transplant starting at 4:00 PM today. Please continue to keep Daniel and Thomas, as well as their family in your prayers.
January 16, Day -1 into Day 0
Tonight our minds our flooded with a wide range of thoughts and emotions. It is impossible to explain all of them to you in the small space provided in the journal and somehow words seem inadequate to even begin to explain them. We have shared our daily steps with you each night, but tonight I want to share with you the words of a song that represents the journey we have gone through to this point................and how we feel we have gotten through. It is a song by a contemporary Christian artist named Mark Schultz, from his album "Stories and Songs."
He Will Carry Me
I call.............You hear me.
I've lost it all. And it's more than I can bear.......I feel so empty.
You're strong........I'm weary.
I'm holding on.......but I feel like givin' in,.....
But still you're with me.
And even though I'm walkin' through, The valley of the shadow,
I will hold tight to the hand of Him, Whose love will comfort me
And when all hope is gone, And I've been wounded in the battle.
He is all the strenghth I will ever need.
HE WILL CARRY ME.
I know.............I'm broken
But You alone,............ Can mend this heart of mine
You're always with me...................
And even though I'm walkin' through, The valley of the shadow,
I will hold tight to the hand of Him, Whose love will comfort me
And when all hope is gone, And I've been wounded in the battle.
He is all the strenghth I will ever need.
HE WILL CARRY ME............................................
HE WILL CARRY ME............................................
And even though I feel so lonely.............
Like I have never been before..............
You never said it would be easy.......
But You said You'd see me through ..............The storm................
And even though I'm walkin' through, The valley of the shadow,
I will hold tight to the hand of Him, Whose love will comfort me
And when all hope is gone, And I've been wounded in the battle.
He is all the strenghth I will ever need.
HE WILL CARRY ME............................................
HE WILL CARRY ME............................................
HE WILL CARRY ME............................................
Our journal entries have often been factual and at times we've tried to share fun. In general, we've tried to be positive because we DO believe that God is with us, but many of the words in the song "lost it all," "weary," "broken," "wounded" "lonely" are true to the feelings we've experienced as we moved through the diagnosis, to understanding, to pursuing treatment, to relocating, and battling against time.
As we watched Daniel through this first 10 days, it has time has felt as if we were walking on the edge....................not that he hasn't done as well as could be expected, but it has been difficult to watch and know. But at those moments that seemed the darkest, God has made His presence known...........
He is with us. We are holding tight to His hand and HE WILL CARRY US through to completion.
Tonight Daniel is VERY peaceful and resting the best he has since we arrived. Thomas headed for bed, upbeat and seemingly confident that all would be well. We are aware of the INCREDIBLE GIFT of prayer that is occurring in Cedar Rapids, elsewhere in Iowa, and around the country.
THANK YOU!!! HE is hearing and He is here................we feel the peace of His presence.
We are painfully aware that our family is not the only family out there that is coming into, in the midst of, or near the end of a crisis. Our prayer for you tonight is that you will hold tight to God's hand and know that He will carry you, even when it isn't easy. There is hope and peace available through Him.
Sylvia
P.S. I highly recommend you consider purchasing a copy of Mark's song. I don't know him, so he isn't encouraging any advertisements, but the words alone do not do justice to the song.
Sunday, January 16, 2005 0:42 AM CST
Day -2
After a rough day yesterday, Daniel started today strong. He greeted Thomas and Larry on the phone with his latest joke, and enjoyed playing UNO with his aunt Rachel. He continued to have a fairly good day with some intermittent rest periods.
He completed his last does of Cytoxin at noon today. The remainder of his prep gets his body ready for the Thomas' unfamiliar marrow.
Later this evening, he has not felt as well. He struggled with diarrhea, nausea and his first temperature spike that got the attention of the doctors. It may be drug related, but as a precaution, they are doing blood tests, taking a chest x-ray, and starting antibiotics.
Thomas had the opportunity to go to another Timberwolves game with his cousin Ben. They got to sit in the second row, and had a great time. Thomas continues to hang in there waiting for day zero.
With just one day to go before transplant day, we ask you to pray that Daniel becomes more comfortable and that if there is an infection, the antibiotics will arrest it.
Thank you for your prayers,
Daniel & Family
Friday, January 14, 2005 11:26 PM CST
Tonight’s update will be short. Daniel had a rough day today. He is still feeling the effects of the Cytoxin; fatigue, loss of appetite and some nausea. ATG was started today also. ATG is used to enhance engraftment and to reduce the probability of problems with graft versus host disease. In itself, ATG has side effects. For Daniel, it was a fever that spiked up to 102.5 and then backed down close to normal sometime after the ATG infusion was complete. All together, the drugs Daniel is receiving in preparation for Monday’s transplant are taking their toll. Daniel is pretty scared right now; he really doesn’t understand what is happening. We are all praying that the next two days go very quickly.
As we approach day 0, we ask you to pray that Daniel tolerates the ATG better with time; that the distress on his GI system is reduced, and that his immune system is completely prepared for a successful transplant engraftment. Pray that in someway God is able to reassure Daniel and remove his fear. Finally, please pray also for Sylvia, who is constantly at Daniel’s bedside. It is very difficult for her to watch Daniel when he is hurting.
We thank you for your continued prayers,
Daniel & Family
Friday, January 14, 2005 0:34 AM CST
January 13, 2005
Day – 4
Out of the mouth of………….Thomas
Many of you who are faithfully visiting the web site are friends of Thomas. So, we thought it would be nice to direct your thoughts his way for a bit tonight. His life has also changed dramatically, but he seems at times to be wiser than his age and at other times to be just a normal kid.
Thomas spends his nights at the Ronald McDonald house with Larry. In the mornings, Monday through Friday, life starts here like it does at home. Get up, shower, get dressed, (don’t forget the deodorant or toothbrush), have breakfast, then off to school. The difference here is that he can leave for school about 1 minute before it starts and be on time because he just needs to walk down four flights of stairs.
He attends school right in the Ronal McDonald house. It is a “one room school house” approach. There are currently 5 children attending, 2 second graders, one 4th grader, one 5th grader, and Thomas. All of them, except Thomas, are girls. None the less, his teacher tells me he is a great kid and good to have in class. He feels that he is doing better on his work because he isn’t afraid to ask questions. He is happy because they all still get a recess at least twice a day. He also never has homework because he is able to keep up with what the teacher plans and they recognize the needs of the family. In the evening, he usually gets a quick snack then heads to the hospital. We try to get him back to the RMH for bed at a reasonable hour to help maintain his health.
Being at the RMH has been somewhat eye opening for Thomas. There are many families and children living there now. The stories are all compelling……families waiting for or receiving solid organ transplant (lung, heart, kidney), other families with ALD, some families with neonates in the Peds ICU………..each situation is different but the needs are frequently similar.
Thomas has observed that we are fortunate to have found this center, at this time.
He noted to night that he was thankful that none of his friends has to experience anything like this. He wonders why everyone asks him the same question ….”Do you know how
awesome this is? Are you afraid it will hurt?” He knows it is just one of those things you need to do and is anxious to get it over. Thomas has learned to put a positive spin on things and seems happy that we are making progress. He also is very aware that we are one of the lucky ones. He is wondering why God lets this happen, but knows there will be a plan for its use and Thomas seems comfortable with those thoughts…..something it took me years to get to.
He will go for a quick check tomorrow and will be admitted to the hospital Monday at 5:45 am. If you would like to send a note to Thomas, you can send that to him at the same Ronald McDonal house address. (This is a not so subtle hint…)
Daniel’s day was a little rockier, but he seemed to bounce back this evening and is doing as well as we would expect given the circumstances. He continues not to eat or drink. He was too tired or too nauseous to do his therapy. He did do some homework with a little work on our side. Tonight Daniel was afraid he was going to die, because he hasn’t been eating or drinking. I assured him that was not a problem, but you have to wonder what is in his head. Tomorrow he adds meds to prevent rejection or GHD (graft vs host disease.)
That’s it for tonight. Thank you for your continued interest. We are amazed that the site receives about 500 visits a day.
Thank you from all of us.
Wednesday, January 12, 2005 9:24 PM CST
January 12, 2005 Day -5
Dear Friends
This is a very quick update because, as you know, this was the day Daniel switched meds. We want you to know that we continue to believe that God is watching over Daniel and hearing your prayers. He was a little slower today. He didn't want to get up this morning, but I can't say that I blame him. He also stopped eating and drinking all together today, with the exception of a package of M&M's he ate while doing his math homework. While eating them, he informed me, in a way that only Daniel can, that this was breakfast, lunch, dinner......."and oh, I'll make it dessert too." (#1. I can't believe I would ever let a child's entire intake for the day be M&M's, #2. In retrospect, it probably didn't serve his tummy well. #3. Mrs. Brunner, at least he did well on his math.) He continues to not have any vomiting or mouth sores. I suspect his stomach may not feel right as evidenced by his lack of intake, but that problem can be managed. Even with his overall decrease in energy, he still managed to try hard during physical therapy, school time with his teacher, speech and occupational therapy.
Thomas continues to have a good week at school. He is keeping up with all that the teachers plan for him so we are hopeful that he will be right with his class when we return............or he may be ahead if they continue to have snow days. He's a little bummed that he's missed those, but will probably get to attend on the other end. I gently reminded him that he missed days before Christmas.
As I said yesterday, I believe Daniel's lesson to all of us today is ......rest when you can. With that being said, this will be a short note tonight.
Thank you for your continued prayers and May God watch over all of you.
Sylvia, Larry, Thomas, and Daniel
P.S. The latest pictures are available at the following link:
www.lanspach.photosite.com/DanielDay
Wednesday, January 12, 2005
January 11, 2005
A Day in the Life of Daniel
Hello to all our faithful friends who continue to visit our website,
We continue to THANK YOU for your interest, your prayers, your notes, and your visits. Even when you haven’t made an entry, we know you are watching. That continues to give us an incredible sense of peace, and the strength to keep moving.
We thought you might like a little insight into “a day in the life of Daniel.”
Daniel is now on Day -6 and our calendar days now start at about 4am, which is when he got his very first dose of chemo. The medical routine includes, chemo every 6 hours, vital signs every 4 hours, and multiple visits from nurses, nursing assistants, doctors, and residents. Daniel has learned that these necessary daily activities do NOT necessarily have to interrupt your life. At night he awakens briefly, but returns to sleep, during the day his team accomidates his needs, (as much as possible) as evidenced by the new pictures. One of the pictures shows Dr Orchard on the floor assessing Daniel, while he was playing Uno Attack with Lisa, the occupational therapist. Daniel also has learned that “testing” can go both ways……so everyone who does something medical to him gets “tested” with his newest joke.
Lesson for his web friends: Do NOT get SO serious about your daily responsibilities that you can’t find time for fun. In general, responsibilities ARE your life, not just an interruption of your fun, so make the best of it, don’t forget to play, and sometimes it’s ok to ask the people around you “to join you on your level.”
* He does “mouth care” four times a day. That means he brushes with a sponge 3 times, then gargles with normal saline three times. Daniel has learned that even mouth care can be fun. During the brushing he blows toothpaste bubbles into the basin and then “explodes” them when he spits out the saline swishes. By the way, the correct name for saline is “sea water,” as it has been renamed by our SpongeBob enthusiast.
Lesson for his web (and second grade) friends: DON’T complain about brushing your teeth twice a day, someone might make you do it more. Remind everyone, that these activities can be fun, with a little imagination like bubble blowing and “sea water.”
* Daniel’s school teacher, Julie, sees him everyday AND she DOES give homework. He gets to celebrate after each homework paper with a game of his choice (usually Uno Attack). Not a bad idea.
Lesson for his web friends: Celebrate small steps. Big projects are great to get done, but it’s more fun to celebrate along the way. And oh, by the way, almost EVERYONE has homework.
* Daniel has other people who are helping keep him healthy and learning.. Everyday he sees his physical therapist, Jocelyn to help keep him strong. He is tethered to an IV poll 24hrs a day. He can only move about 3 feet in any direction, without putting his central line at risk. Daniel learned that there aren’t any reasons not to exercise and in fact, now mom plays Uno Attack with exercise (directed by Daniel) before each turn. His occupational therapist and speech therapist will also see him during the day. Their plan is not complete, but it breaks up his day and when you can’t go out in the world, it works to have the world come to you. The key now, is to help Daniel recognize that the world isn’t totally revolving around room 4-211.
Lesson for his web friends: There really aren’t any excuses not to keep moving (this has been one mom definitely learned today). It also doesn’t hurt to let the world come to you when you can’t go to it.
* Every day, in the evening after supper, Daniel has to take a shower and every other day he gets his Hickman dressing changed. These are NOT his favorite activities, particularly because it’s cold here in Minnesota (and we hear in Iowa). A warm blanket is like a piece of heaven, so on the days that the nursing assistant does that……oh man, is life good.
Lesson for his web friends: Keep your blankets warm, they can be heaven.
His routine will change a bit tonight at 10pm when they really start pushing fluids. Starting at 10 am tomorrow morning, he changes to Cytoxan and will be required to empty his bladder every 2 hours, night and day, to avoid bladder irritation. We suspect that will also provide some new life lessons……….probably something like, sleep when you can. In the mean time, Daniel is doing very well. He is going with the flow, only occasionally pushes back, plays when he can, and reminds everyone to keep things at his level because he’s really a kid.
The rest of us are also working toward a routine. Daniel’s needed to be in place first, but we hope the rest will follow soon. Mine is pretty tied to Daniel’s and I am becoming creative at getting through the day. I hope to have access to work soon. Thomas is in school every day. His routine is a little more normal. Larry is probably in the worst situation because he is bouncing between Thomas, Sylvia/Daniel, maintaining some of the responsibilities of day to day work (laundry, bills) and trying to get started with a work schedule.
For now, our prayers are: 1. Thank you God for Daniel’s tolerance of treatment thus far, it is a true blessing. 2. Thank you God for an INCREDIBLE kid focused team. The staff has been great. 3. We pray that Daniel will tolerate the change in meds and continue to have minimal side effects. 4. I (Sylvia) ask that you especially keep Larry in your prayers, as he attempts to get into a more reasonable routine. 5. We pray for each of you, that you will have health and that when life is a bit rough that you will find ways to keep it tolerable. God Bless Each and Everyone of You.
Sylvia (P.S. Check out the pictures)
Monday, January 10, 2005 11:40 PM CST
This will be a brief entry.....it is late, and the author is pretty tired...
Daniel continues to tolerate the chemo well. They increased the Bisulfan since his reading was a little on the low side. He was pretty busy today, with the physical therapist and the child-family specialist visiting in addition to all of the regular staff visits.
Thomas had a great time at the game tonight...although he said it would have been better if the Timberwolves had won. They were ahead most of the game, but seemed to run out of gas toward the end and the Lakers pulled ahead.
For tomorrow, pray that Thomas remains healthy. As we approach day 0, we are getting more anxious about that. Also pray that Daniel tolerates the increased chemo dosage.
Finally, pray that we get our schedules organized enough for Sylvia to get more rest. She is spending about 20 hours a day at the hospital(she sleeps in Daniel's room overnight.) Tomorrow, I am taking the laptop over to her room and getting another computer for our accomodations at the RM house. That way, she can stay a little more connected to the rest of the world.
Thanks to everyone for their continued prayers.
Daniel & Family
Sunday, January 9, 2005 11:32 PM CST
Daniel continues to do fine with the chemotherapy regimen. We are grateful that he is not suffering any noticeable side affects. We are all still adjusting to the transition into the hospital, getting things organized and learning the schedule of the BMT team. The nurses take very good care of Daniel. Tonight right after his mom helped with his shower, they came to his room with toasty warm blanket.
On day -5 (Wednesday, the 12th) Daniel switches over to cytoxin. Pray that, as he switches medications, he doesn’t suffer any nausea or other side effects; that he tolerates it as well as he has tolerated the busulfan.
We are very grateful to our small study group in Cedar Rapids who met tonight. They called us at the hospital at 8:00 tonight and we prayed together over the phone.
Sylvia wants to share the following scripture and words from the Women of Faith Devotional bible:
“Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness. I say to myself, ‘The Lord is my portion; therefore I will wait for Him.’” – Lamentations 3:22-24.
The commentary goes to say, “God’s word is a faithful testament to the human experience – to joy and to sorrow. Both are given reverent understanding. So often in contemporary Christian culture we attempt to rush people through the grief process, as if our faith in God extinguishes human pain. Far from it. Believe in God gives us the strength to feel what is true and yet because of our sovereign, loving God, we do not lose hope.”
We pray for God’s loving peace on everyone who reads journal this as we start another week.
Daniel & Family
Saturday, January 8, 2005 11:36 PM CST
Day -9
Daniel continues to do very well. So far, he is tolerating the chemotherapy well. He had a sore back today which brought some concern of infection from the spinal tap. But there was no fever so the doctors think it is meningeal irritation from the spinal tap.
The doctors and nurses at Fairview University hospital are great to work with. They truly believe in a teamwork approach involving the medical staff, the patient and the family. They are genuinely glad for the help that Sylvia provides in taking care of Daniel.
Dan and Sara continued to provide support to us today, and the boys were glad to see their Dad, Tim, who came up for the weekend from Cedar Rapids.
Once again, thanks to everyone one for your prayers. As we go through the actual transplant process, we ask you to pray that progression of the ALD is minimal. We are aware of the fact that in some patients the disease can progress during this period of time.
Oh, the subject is "Day -9." The BMT team works around a protocol schedule with Day 0 being transplant day, which is Monday, January 17th for Daniel.
Daniel & Family
Saturday, January 8, 2005 1:17 AM CST
This has been a busy and blessed day…..First things first. Take a moment and go to the “View Photos” link below and to the “Hospital Pix” link a bit further down. Then come back for the news….
Now for the news of the day. Daniel was admitted to Fairview University hospitals at 7:30 this morning. He went into the OR for four procedures at 9:00; a spinal tap, a bronchoscopy, an MRI and installation of the central line for his chemo, etc. Daniel woke up early in the afternoon and as you can see from the pictures is doing fantastic. He is a little sore where he was poked, but as the BMT doctor said, “Not much worse off for the wear.” All we need to do is get Daniel to remember that he has a central line in….he seems pretty much oblivious to it! Daniel will start his chemotherapy regimen tomorrow.
Sylvia heard some very encouraging words from one of the BMT doctors attending to Daniel this morning. He said that out of all of the ALD patients he had seen going in for BMT, he good only think of one or two who were in as good a shape as Daniel. He congratulated Sylvia on how quickly we were able to get Daniel to transplant!
Thomas is doing well also. He was at school today, and then went with Larry over to the hospital to visit with Daniel and his mom. Last night he got the wonderful news that he will be going to the Timberwolves game (they play the Lakers!) on Monday night. Kevin Garnett of the Timberwolves invites children from local organizations to watch the game from his suite at the stadium. Thomas will be going along with other children from the Ronald McDonald House (eat your heart out Will! ) …Later in the evening, our dear friends Dan & Sara Veerhusen from Cedar Rapids came up to visit. We can’t wait to see the video of the prayer service that was held at All Saint’s church earlier in the day.
Our family is sad that we now have to be separated in the evenings….but feel fortunate that we are only a few blocks away from each other. Thomas and Daniel are looking forward to a visit from their Dad Tim, who is coming up from Cedar Rapids late tonight.
Everyone needs to know that while we exhausted our last appeal to the insurance company and Columbus McKinnon, our involvement in this issue is far from over. The Department of Human Services and the Governor’s office for the state of Iowa, the United States Department of Labor, along with US senators from three states are now involved. We will be posting more information on our efforts and how you can help over the next couple of days….so stay tuned.
Once again, there is no way for us to express our appreciation for the magnitude of support we have witnessed for Daniel and his family. Each and everyone of you needs to know that the kind words you post at the website daily help provide us the fuel we need to continue to face the challenge of each new day. Please continue to pray:
• Praise God for finding a way to get Daniel into treatment quickly!
• Praise God that the procedures today went so well!
• That over the coming weeks, Daniel experiences as little side affects from the chemotherapy as possible.
• That Thomas stays healthy as we prepare for transplant “day zero” on January 17th.
• That Larry and Sylvia and the rest of Daniel’s family are comforted and reassured by the knowledge that God is always watching over them and Daniel.
We continue to rest in the grace of God, knowing that in His will, all things are perfect.
Sylvia, Larry, Daniel and Thomas
Friday, January 7, 2005 0:19 AM CST
Last night we received our third denial from North American Administrators and Columbus McKinnon. They refuse to pay for Daniel’s transplant because they continue to identify it as experimental and this time they denied it based on the off label use of a drug named cyclophosphamide. We are reserving the right to consider further action until after we proceed with Daniel’s transplant.
We found this notice to be disappointing and still believe that the experts we consulted have provided enough evidence to support this treatment as the standard of care.
We heard on the news that Columbus McKinnon was starting a contribution fund “for the family” from their employees. We will not utilize, nor accept those funds and recommend that their employees consider directing them into a fund to protect their own children and families.
The good news is that we have received sufficient medical expense coverage through Medicaid with the State of Iowa to proceed with Daniel’s transplant on Friday, January 07, 2005. His first 10 days will be primarily chemotherapy in preparation for the infusion of his new marrow from Thomas. If all goes well, his transplant day will be January 17th.
As we move beyond the challenges of the last two weeks we do want to take a moment to again thank God for all that He has provided. We do believe that He has a purpose for all of this that is much greater than Daniel or our family. We feel that it most likely impacts all of you that are aware of our situation, are stirred by it, and are responding. We pray that God will direct us to the place we need to be and utilize this experience to help others who may have similar experiences.
Thank you for your continued interest in Daniel. Please keep watching the web site. We did remind ourselves today that unfortunately the insurance battle wasn’t the real fight.
That has just begun.
As a reminder...there will be a Prayer Service for Daniel on Friday, January 7, at 9:15 am at All Saint's Church. The address of All Saints School (Daniel's school) is 720 29th St. SE and the church is right beside the school.
Thursday, January 6, 2005 7:40 PM CST
To all of Daniel's friends:
So many of you have asked what you could do to help.....Well, this is it!
Mrs. Patti Greenwood from Daniel's school in Cedar Rapids posted the following on his website. We believe so very much in the power of prayer. We are grateful for Daniel's school for offering up the opportunity to join together in this show of faith and support.
Please pass this on to all of your friends in the Cedar Rapids area. We would love to hear that All Saint's Church is "Packed!" Please keep in your prayers not only Daniel and our family but all of the children and families that have to face these trials.
Know that our faith in God is unwaivering, that we place our trust in His will. We are grateful to Him for all He has provided us in our battle. We have allready seen His hand at work around us and we are firm in our conviction that a tremendous good will come of this for many, many people down the road.
Please call and email your friends and invite them to join together in prayer for Daniel.
Sylvia, Larry, Daniel and Thomas
To the Large Circle of Faith Filled Friends of Daniel and His Family,
There will be a prayer service held tomorrow morning (Friday, Jan. 7) at 9:15 a.m. at All Saints Church in Cedar Rapids. The address of All Saints School (Daniel's school) is 720 29th St. SE and the church is right beside the school. There is a tremendous outpouring of prayers being offered for Daniel and his family. This is a great opportunity to gather as a community of faith that can celebrate and pray for the awesome gift of Daniel Canfield. We so often see examples of "pack the gym" for athletic teams. Help us "pack the church" with prayer and support for this most important team of the family of God! Thanks!
January 3, 2005
No Child Left Behind?
The mantra of the political arena in the last few years had frequently been that no child should be left behind. I do know that that phrase really was aimed at ensuring all children can read and have educational standards that are consistent around the country. Today that phrase has resounded in my head related to a different topic…….insurance.
Daniel had insurance, but his insurance has now denied both the initial request and the appeal. The first denial was received Dec. 27th at 10 am in the morning. We verbally appealed at that time and sent a written appeal by 4:30 pm. They had 72 hours to respond. On Thursday at 2:30 pm I contacted our case manager at North American Administrators, which is the insurance administrator for Columbus McKinnon who is self insured. She told me a decision had not been made and she would “call me on my cell phone, when it arrived.” I reminded her the 72 hours was close. As of today, we had not heard. The employer for Daniel’s health plan and our attorney contacted North American Administrators this morning and were told by the same case manager that the decision had not been made. Late this afternoon, the insurance company called asking why I had not returned their call. I had never received the call. In every other contact the case manager had called and left a verbal message, this time she reports she left a “call back number.” Tonight at 6:52 pm we received a FAX dated January 3, 2005. Attached was a letter dated December 30, 2004, again denying the claim. They had our FAX number on December 27th, but chose not to send it until today? Now they deny for two reasons, the first being that they are interpreting the treatment plan as a phase II trial. This was in their original denial. That wording is not in the protocol, nor the consent. The transplant physician contacted the medical director and explained that this was not a phase II trial ….it is the “Standard of Care” for children in Daniel’s situation. He followed with a letter and an additional letter was sent by an another expert from the University of Minnesota. This is the standard of care. The second reason they have now added is that adrenoleukodystrophy is not listed under possible reasons for BMT in the insurance plan.
How incredibly ridiculous! Is gunshot wound to the left thigh listed? Or do you need to know the exact type of gun?
The physicians here are in shock. It is so incredibly clear to them that this is the standard of care for this child. They even state, that there are times when you really don’t want to transplant someone, but in Daniel’s case they feel there is NO DOUBT that this IS the correct plan.
We have contacted Senator Grassley’s office, Senator Harkin’s office, they have had discussions with the Department of Labor. We also have contacted the local media.
One of the physicians here told me that 1 out of every 6 children in this situation gets stuck in the insurance process. My friends, NONE of these families should experience this and NO child should be left behind because of the consequences of the decisions of the companies. This IS wrong. The diagnosis is clear, the medical necessity of the treatment is clear, the standard of care is established and has been recommended by:
Dr. Bonthius at the University of Iowa, Dr. Larry Charnus, Dr. Elsa Shapiro, Dr. Paul Orchard all of the Univerisity of Minnesota, and Dr. Hugo Moser and Dr Gerald Raymond from John Hopkins.
Please continue to pray for this situation and if you have any contacts that might bring this to light in the media in the government or elsewhere……contact them. Not for us, but for any other child whose family might not have the strength or the courage to fight.
Sylvia
Sunday, January 2, 2005 1:11 AM CST
We desparately need your prayers over the next couple of days.....
The BMT doctor called us this morning to tell us that Daniel has been taken OFF of the schedule for the start of the procedure on Tuesday. The hospital took that action because the insurance company has not yet responded to our appeal to the initial decision not to cover the procedure. The hospital cannot proceed, even if we commit to pay, until they have received word from the insurance company one way or the other. Our appeal went out last Monday. By law, the insurance company was required to respond within 72 hours. Tomorrow will be 6 days, with no response received.
Please pray that the insurance company and the hospital resolve this very, very quickly so that Daniel can get the treatment he needs. Every day the transplant is delayed adds more risk to Daniel's prognosis.
We want every one to pray that same prayer for every family that may be facing this kind of situation.
Sylvia, Larry, Daniel, Thomas and Jennifer
Friday, December 31, 2004 11:28 PM CST
This is just a short note about contact informaton now that we are settling into our new "home" in Minneapolis.
US mail should be sent to
Daniel (or Sylvia, or Thomas, or Larry or Jennifer!)
c/o Ronald McDonald House - Room 443
621 Oak Street SE
Minneapolis, MN 55414
Please use our local number (612-331-5752) if you want to call us. We do have our cell phones if you need to reach us when we are not at the Ronald McDonald house. They are 319-270-0296 (Sylvia) and 319-270-0252 (Larry.)
Our dear friennds Dan and Sara Veerhusen drove up from Cedar Rapids today. They brought up "stuff" that we didn't have room for. It was very comforting to have some familiar faces to visit with. We went out to dinner then went to the game room to play a game of pool and video games.
More tomorrow, including some pictures of the RMH.
Happy New Year to Everyone!
Sylvia, Larry, Daniel, Thomas & Jennifer.
Wednesday, December 29, 2004 9:41 PM CST
Well, we are getting settled in here in the twin cities. We were able to get accommodations at the Ronald McDonald house; which is great. It was a bit of a shock at first, going from a relatively large house with lots of room to a small apartment with one bedroom that has two double beds and a bunk bed.
This was the first day of “work-up” week. Daniel visited several doctors to make sure he is ready for the BMT. He had blood drawn, saw the BMT doctor, the central line clinic, and the eye doctor. Thomas also had blood drawn. They both had EKG’s and chest X-rays. We don’t expect any surprises. The blood work already came back and it is okay. There are more tests over the next few days.
Assuming all of the tests are okay, and the scheduling gets worked out, Daniel could be admitted as soon as next Tuesday. That would be day -10 of the schedule, with day 0 being Transplant Day. The nurse coordinator reviewed the protocol with us this morning. If things go as planned, Daniel could go back to outpatient somewhere around day 25-30, post transplant. We would still have to stay in the Minneapolis area at least until day 60. How much longer beyond that will depend on how well he does.
We had our first dinner at the RM house this evening. Various organizations come in to serve dinners in the main dining area every evening. We did a bit of exploring after dinner. The boys were delighted to find a game room in the lower level of building 4; and the gym in the lower level of building 1.
We have several praises and requests for prayer to share with our friends:
We thank God so very much for our dear friend Dan. There is no way we could have managed to get up to Minneapolis as quickly as we were able to without his incredible help. God Bless him!
We thank God for the wonderful support of our Hillcrest Wesleyan Church family; and for the prayers offered up by the pastoral staff and our friends at our house the day we left.
We thank God for providing a safe trip for the family to Minneapolis, and for our ability to get accommodations at the RM house.
We continue to feel that we have found the best place for Daniel’s treatment. It does appear that the Pediatric BMT unit here is the best there is.
We ask God to help us to quickly feel at home here. We do feel very displaced at the moment. Particularly, pray for Thomas, who is feeling all of the emotions, fears, worries, and lack of home that the adults are, but he’s only 12. He recognizes the huge responsibility he has accepted and the risks to his brother have become more real here today.
We ask God to continue to surround us with His presence; that we may continue to trust in him and not fear for Daniel.
We ask God to smooth the process of obtaining insurance coverage for the transplant. We were disheartened to receive an initial rejection from the insurance company.
We believe there was a misunderstanding about the nature of the transplant and pray that with the right communication, an appeal to reverse the decision will be successful.
Finally, we again thank God for each and every person who has taken the time to visit the website, send us a note; and most of all your prayers. We treasure all of them.
Sylvia, Larry, Daniel, Thomas & Jennifer
Tuesday, December 28, 2004 1:07 AM CST
It has been a couple of days since we added an entry to the journal. WE HAVE BEEN BUSY. For a moment, just imagine if someone told you that you will be moving your family to Minneapolis....and you have three days to prepare. During that time, you have to plan for a bone marrow transplant...and by the way, you squeeze Christmas in there somewhere. But we are very glad that we are able to get the transplant preparation work started so quickly. Our first appointment is on Wednesday. We leave for Minneapolis tomorrow.
Daniel is doing fine! He had a wonderful Christmas with his family including his grandparents from Leon, Iowa.
Even though we cannot respond to the individual emails and postings at the website, we want everyone to know how incredibly important your messages are! I thought about it today, and the words of encouragement seem like fuel for our efforts. Thank you all so very much.
Sylvia, Larry, Daniel, Thomas & Jennifer
Friday, December 24, 2004 9:38 PM CST
A Miracle in the Making
To our dear family and friends:
Many of you are hearing about Daniel’s diagnosis just now, some have known for almost as long as our immediate family. For those of you who are just now finding out, we want you to know our hearts are with you, as well. We see the pain in your eyes, we hear the fear in your voices, and we wish that those feelings were not ones you needed to experience with us. Our family prefers to be on the opposite side (not that any one desires THIS position). More than ANYTHING at this time, we want you to know that your cards, notes on the website, hugs, tears, calls, and caring glances are not going unnoticed. We appreciate every single contact more than you can ever know.
Far more important for you to know is that we feel, without a doubt, that your prayers are being heard and they are being answered.
I have often heard people say when “bad” things happen at Christmas......”why now,” “why do bad things happen this time of year?” Recently in our ABF (Adult Bible Fellowship) class we have been studying a book called The Christmas Story by G.A. Myers. In the second week, the reflection ask if we had ever noticed that Christmas came at just the right time of year. It went on to say that after an entire year of peaks and valleys that we come upon the Christmas season. A season with a story and at the heart of the story is a promise.........a promise of strength, warmth, and hope......even at your darkest times. As you listen to the story your hear “Do not fear, God is here.” I heard that reflection about two weeks before our news. That week had been particularly difficult at work and it had great meaning at the time. Two weeks later, those words crossed my mind, a quiet reminder to lean on God.
When Daniel was diagnosed, there are not really any words to describe the feelings that flooded my mind. The day after his diagnosis I was driving home in the van, crying and screaming at God. All I could say was “Please God, NO!!” “Please God help us.” “Please, God.” That night I sat down at the counter after the boys were in bed. In front of me was a small book that Daniel had made at the church that night.....at the time I was begging God for help. On the front of the book were these words:
“For I know the plans I have for Daniel, declares the Lord, plans to prosper you and not to harm you, plans to give Daniel hope and a future.” Jeremiah 29:11
At that moment I knew that God was near and was quietly reassuring us. There are no promises of outcome, but I do know that God has a plan and a purpose for Daniel. "Do not fear, God is here."
I continued to struggle the following day. ALD was unknown to me, but bone marrow transplant was not. I struggled with even considering the cure, but came to realize that my unwillingness to consider transplant might cost Daniel his life. Thursday I began to search for answers. I was lead to two places, The University of Minnesota and John Hopkins. In a rather bold and politically incorrect way, I e-mailed two of the world’s leading experts in ALD, Dr. Elsa Shapiro and Dr Hugo Moser. Dr Moser was out of the country, but I received an additional contact. Dr. Shapiro called me at home at 8 am the next morning, just 7 hours after I had hit send on the computer. At the time,we didn’t know it, but again this was an incredible turn of events. She arranged for us to visit the University of Minnesota three days later. "Do not fear, God is near."
At the U of M, we discovered a few things:
1. Only about 200 transplants have been done for ALD, the U of M has done the most cases, in the world.
2. Dr. Shapiro, Dr. Charnas, and Dr. Loes had done much of the research on what indicators make a child with ALD a good candidate for BMT. We saw two of the three. The third, Dr. Loes, will review his MRI.
3. Dr Shapiro and Dr Charnas both had to leave town within 1 to 2 days of our arrival ......if we would have waited for the test results, we would have missed them.
4. Daniel WAS a transplant candidate, which surprised everyone, because the eye symptoms he was experiencing are usually a later sign.......and in general at that point it is too late to transplant. There are no other good options to treat ALD.
5. Dr. Moser’s colleague, Dr. Gerald Raymond, contacted us as well. With his assistance the turn around time on the blood test that confirms ALD happened in one week. We had originally been told that it could take 2 to 3 weeks.
The result of all of this is that, we found the experts, they responded quickly, the diagnosis was confirmed, he was determined to be a transplant candidate, and the process was started in just one week. This is incredibly significant in a disease that progresses rapidly. Transplant will not reverse his deficits, it will only arrest the disease. The sooner we transplant Daniel, the more likely he is to continue to be able to live normally. Our statistics went from death in 2 years, to a 60 percent chance of long term survival. “Do not fear, God is here.”
One by one, barriers to getting this done continue to collapse. Jennifer returned home from college, at just the right time to be with us on our initial trip to Minnesota. This was an incredible comfort to both the boys and allowed Larry and I to focus on the immediate needs in the visit, without worrying about the boys being alone.
The insurance company assigned us a case manager immediately, and they are working to make the transplant an in network provider. Our employers, Dr Ghosh and Dr Zenk at Iowa Blood and Cancer Care, and Rockwell Collins have worked with us to identify workable and stress limiting ways to manage our work. The Ronald McDonald house in Minnesota has exceptional accommodations that allow us to remain together as a family, while addressing concerns for keeping the boys in school. The local schools, All Saints and Regis, have offerred endless assistance and help in keeping both Thomas and Daniel from getting behind in school. And now, Thomas, who had only a 25hance of being a donor was a complete match to Daniel. “Do not fear, God is here.”
Lest you think I am either in denial, unaware of what is happening, under the influence of some mind altering substance, or just plain uncaring.........I am not any of these. In fact, at times I am terrified, at times I cry, I do feel the stress of preparation and the transitions that are occurring, and I know all too well what the diagnosis and treatment mean. I have helped people with cancer in their experiences. I have worked as a transplant nurse. I know and I feel, but just at the moment that I am about ready to crumble or doubt, someone has been there. Your hugs, your prayers, your calls, your cards, your help, your meals, your e-mails, the decorations on our house, a sermon, a prayer, an alter call when you are there, children reaching out to Daniel by calling and caroling, assistance from the schools, the extension of the prayer circle for Daniel crossing not just town, but the country and religious denominations,......each and everyone of you represent to us the power and presence of God here on earth. You have been His hands and His presence has been revealed to us through you. “Do not fear, God is here.”
We would like to be able to thank each of you individually for the strength and support you have provided our family. We have been blessed by your prayers and your presence. We want you to know how much that has helped us get through the very difficult moments and days, but more than that we hope for you;
* To know that your prayers ARE answered. Maybe not always they way we would have preferred, but in the way He has planned.
* To know that God did not make or allow Daniel to be ill, but that He is with us and paving the way for his healing.
* To know that God works through you....your actions, your thoughts, your words, your prayers, your songs.
* To recognize the full meaning of the Christmas story, the strength, the peace the power and the hope.
* To cherish the relationships you have with your children, with your family, with your friends, and with each other. It amazes me the extent to which one child has touched the hearts of people from all over the country and across all religious backgrounds, just think of the possibilities those relationships represent.
Most of all, we want you to see the Miracles that are occurring and the full power of
God, at work. In your darkest moments may you remember:
“Do not Fear, God is here.”
Thank you and Merry Christmas!
Sylvia –
Daniel’s mom
Thursday, December 23, 2004 11:08 PM CST
Today, we received the incredibly wonderful news that Daniel’s brother Thomas will be an excellent donor! It is definitely an answered prayer. The sibling match is the best possible. It reduces the risk of rejection and other complications, and may actually result in a somewhat shorter transplant process.
We will be leaving Cedar Rapids for Minneapolis on Tuesday, December 28. Start of the workup for Daniel begins the following morning. We don’t know for sure where we will be staying initially. If there is room at the Ronald McDonald house, we will be staying there. If not, we will probably stay at the Residence Inn in Roseville until something opens up at the RM house.
Thank you all so much for your prayers! Please continue them.....They are working!
Sylvia, Larry, Daniel, Thomas and Jennifer
Wednesday, December 22, 2004 10:06 PM CST
Daniel had a good day today; especially tonight. About 20 children and 20 adults from Daniels school (All Saint’s) visited Daniel at home tonight to sing him Christmas carols and to give him some presents. They weren’t the only ones giving presents.....Santa HIMSELF made it to our house too! That was all a tremendous surprise for Daniel and the family. Take a look at the great greeting they sent on the picture page.
- Please pray that the final tests come back with results that show that Thomas will be a good donor match.
- Pray that all of the paper work and scheduling necessary to start the process will go smoothly so that we can get Daniel the treatment he needs as soon as possible.
- Tonight, we especially want to thank God for all of the wonderful friends he has surrounded us with; who seem to know exactly what is needed at just the right time.
Sylvia, Larry, Daniel, Thomas & Jennifer
Saturday, December 18, 2004 11:11 PM CST
Here is some history for those of you who do not know how we got to where we are today.....
Early last year, we noticed some changes in Daniel's reading behavior that pointed to eyesight problems. Initially, the problem appeared to be simple exotropia, or outward turning of the eye; not an uncommon condition for a child Daniel's age. After seeing a local opthamologist, it was decided to montitor the condition until it stablilized at which point surgical correction would be considered.
Rechecks over the following months pointed to an increase in the divergence. Daniel's visual acuity tested lower as well. We were told that the acutity loss was probably behavioral.
As time went on, we felt that the decrease in visual acuity was not behavioral and made the decision to seek a second opinion. Daniel visited the pediatric eye clinic at the University of Iowa in late November. The doctors there agreed that it appeared that something was in fact causing a decrease in Daniel's eyesight. The standard eye exam did not point to any obvious problem so an MRI was scheduled along with an Electroretinagram.
In early December, a head MRI scan was done. At first, the doctors indicated that there were no problems with the MRI. But hours later, they called back requesting that Daniel come back the next day.
The next day we visited first with the neuro-opthamologist. He showed us Daniel's MRI indicating problems in the area associated with eyesight. We then visited with a Pediatric Neurologist who gave us the preliminary diagnosis of Adrenoleukodystrophy (ALD.) He explained that ALD was a degenerative disease of the brain that resulted in demyelination of the brain nerve cells. Untreated, the demyelination results in a progressive loss of brain neurological functioning, leading to a vegetative state. Death usually occurs in about two years. The only treatment for ALD is bone marrow transplant (BMT.) At that time, we didn't know how far the disease had progressed and did not know whether a BMT would be an option.
After recovering from the initial shock of finding out, Daniel's mom Sylvia did some research on the facilities that appeared to be leading the research and treatment of ALD in the United States. She sent emails to Doctor's at Johns Hopkins University and the University of Minnesota on Thursday evening, December 9.
Early Friday morning, Sylvia received a phone call from Dr. Elsa Shapiro, Director of the Pediatric Neuropsychology unit at the University of Minnesota. Dr. Shapiro told us that she thought Daniel's situation was indeed very serious and that it was important for us to come to Fairview-University Children's Hospital as soon as possible for an assessment that would determine Daniel's suitability for treatment.
The whole family left for Minnesota on Monday, December 13. Over the next three days, we visited Dr. Shapiro as well as the BMT team doctor, and the pediatric neurologist. We were very impressed by the medical team. They were open and honest about Daniel's situation. Yet they were also very compassionate and optimistic about the chances for a successful treatment.
Both the neuro-psych testing and the MRI assessment indicated that the disease had not progressed very far, and therefor, Daniel would be a good candidate for a bone marrow transplant.
Blood samples were drawn from both Daniel and his brother Thomas to determine if Thomas would match as a related donor. There is a one in four chance of that happening. We are expecting the results of that test any day now.
Simulataneously, searches are being done in the National Marrow Donor Program Registry for an unrelated match or umbilical cord blood match.
So, as we write this initial journal entry, we are waiting for a match to set the transplant date. Once a suitable match is found, Daniel and his family will return to Minnesota to start the long difficult BMT process.
We are all very grateful to God for the loving prayers and messages of support we have received for Daniel and his family.
We ask for your continued prayers that a quick match will be found. We also pray that all of the planning required to relocate the family to Minnesota over the next few month's will go well and that God will continue to work in Sylvia and Larry's lives to lift the burden of anxiousness.
Please visit us often and drop us a line whenver you get a chance
....Sylvia, Larry, Daniel, Thomas and Jennifer
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