Colleen and I just got home from our appointment at Duke. The doctor says that the right hip has collapsed considerably and a bone graft or another core decompression surgery are our choices. He said that usually only 2 hip replacements secure well to the bones and they only last around 15 years each- so he does not recommend that surgery at this time. A bone graft will only postpone the eventual hip replacement. She will always have what he called start up pain which means that she will hurt when standing or sitting or when she begins walking. Her hip bone is too flat now to hope for normal function of that area. When i asked him if she could participate in sports he stated that he felt that her knees will give her too much pain to participate. They are also very affected by the osteonecrosis. Her wrists are also causing her some pain at this time which concerns me. If we decided to have another core decompression, it would take her pain away but she would still need hip replacement on the right within 3 years. So our choices are limited and the outcome will not be great but I guess we have to hope for the best. Her bone graft to the right hip is on Wednesday. Please pray for wisdom for the doctor, steadiness of hand, and good pain relief after the surgery. We did get a bit of good news. The doctor feels that the left hip has collapsed but on the side of the hip not the weight bearing point and he feels that it will heal well without needing a bone graft or a replacement. We are saddened by the news but we know that God has the ability to alleviate her pain and controls the outcome of her surgery. We appreciate your prayers!!!!!!

Surgery at Duke University

I spoke with Dr Ruch at Duke University finally today. I have been waiting on his call for 2 weeks now. He said that the right hip bone has collapsed some but the left hip remains intact. Colleens MRI showed a natural progression of the osteonecrosis. We were hoping for healing but that does not appear to be in God's plan for her at this time. I requested that he add her for surgery as soon as possible so that she will not need to miss too much school in September. He told me that his staff will call me soon with a date. Colleen is understandably disappointed about needing more surgery. Please pray for wisdom for the doctors, for an uncomplicated and quick recovery for Colleen, for resources to assist with transportation to and from the hospital, and that Colleen will be encouraged despite the circumstances. Please pray often that the graft will heal and that this surgery will correct the defect so that Colleen will not need a hip replacement in the near future and continue to pray that the left hip will remain intact. Colleen will be on crutches for 5 months with the right hip and another 6 months with the left hip. This will be another long road to recovery but we know that God has a plan for Colleen and our family and he knows what is best for us. Thank you so much for your prayers and concern for our family. Tammy

Visit to CHOP Hospital Children's Hospital of Philadelphia

It has been a long few days. We left Sunday afternoon and drove 11 hours to Philadelphia. We had an appointment with a hip specialist and returned home at 11pm tonight. It was a whirlwind trip with a lot of information to process. The doctor told us that Colleen should not bear any weight on her hips for 8 more weeks. This allows the holes which were drilled into the hips to heal. He stated that the bones are very soft during this time and collapse of the joint is more likely to occur. He said that he normally drills a bunch of small holes in the hip and then takes bone marrow from another area and injects it into the bone to help stimulate bone growth. He said that he would allow her to recover from this procedure and then reconsider another core decompression of the hips if her pain continues. At that time he would inject the marrow into the bone. He has had good results with sickle cell disease and variable results with cancers. This is not a quick cure or a guaranteed cure, but he felt it would be worth a try. 

     He informed us that she will need a hip replacement in the future but does not know when. It could be five, ten or fifteen years. In the meantime, no sports for high school. She can ride a bike or swim but no contact sports. He also mentioned a procedure done at Duke University called a femoral graft. Bone is taken from the femur with blood vessels and grafted over the hip. The new blood flow is then thought to allow for bone healing. I will call Duke tomorrow for an appointment to discuss this with them. It is just as invasive as a hip replacement. We would have to consider all the pros and cons. 

     We also found out that the osteonecrosis of the knees is also severe and may require knee replacements later. He suggested core decompression of the knees and wrists if her pain continues. He has a friend who worked with him that is now at U of M and he will speak to her this weekend to see if she would be willing to perform the procedure for us here in Michigan. Bone marrow would also be injected into these areas to help facilitate healing. Colleen is willing to have the surgery if her pain continues. We are slowly weaning her off of the oxycodone. She is currently on 40 mg every 8 hours. We can only wean by 20mg daily every 3 to 4 days to prevent withdrawal. This could be a lengthy process. 

     We appreciate all of your prayers and would ask that you continue to pray for wisdom for the doctors, direction for us, and encouragement for Colleen. She was understandably sad today but seems to be handling the news better than I would as a teenager. 

     

Results after core decompression of hips

I am going to update those of you who have not been on facebook. Colleen returned from her make a wish trip and her pain began to improve last week. We were able to decrease the amount of medication she was taking but it is still a huge dose. We had an appointment with the orthopedic doctor about 10 days ago and he states that core decompression of the hips was an option to alleviate her pain. Apparently, the dead bone, tissue, and inflammation in the bone presses on the nerves and was causing the excrutiating pain. We had the procedure done on thursday morning. She has two incisions on the legs with a few stitches at this time. We did have to increase her medications because of the incisional pain but are praying that we can take her off of a lot of this medication soon. 
     She is understandably frustrated with the added pain and the fact that she has been sick for so very long but she never complains. After the surgery we had a discussion with the ortho doctor. The procedure went well. They drilled holes in the hip bones to allow some of the dead bone to come out and everything went well. I asked him about how much of the femoral head or hip bone was affected and he said it was seventy five percent. None of the bone has collapsed at this time, but much of it is affected. He then said that she may need bilateral hip replacements in the near future. I was confused because he did not tell me this at her appt the week before. We clarified this with him. Apparently there is no way to predict how much of the hip will collapse. It depends on how quickly the new bone begins to grow in. When the new bone grows too quickly, it gets soft and the bone can collapse. There is another procedure which involves grafting bone and blood vessels from another area to help the circulation to the area but the ortho we have has not had much success with this operation. We are going to research all of our options. Monday I am calling both St Jude's and Children's hospital of Philadelphia to research all of our options. Please pray for relief from this pain, for encouragement for Colleen, and for wisdom for the doctors and that the Lord will provide direction in what treatment options will be best. Please also pray that the hips will remain intact. It truly would be a miracle but our God is able.

Make a wish trip

    We arrived home late Friday night. Colleen's make a wish trip was to West Edmonton Mall in Canada. We did plenty of shopping at least 8 hours per day. The girls were able to swim with a sea lion named Pablo and really had a great time. We did not go outside the entire week. The mall is the third largest in the world. It was impressive. There was an inside amusement park. a water park, putt putt golfing and much more. It was a much needed vacation and we are grateful to the make a wish organization for their generosity! They did a wonderful job planning the trip and we really had a great time. We had a quiet Easter dinner at home-just the five of us. I guess I am experiencing jet lag. I have not had much energy the past few days. Len prepared most of our Easter dinner today which was really a nice change of pace. 
     Colleen is still having considerable pain. We have an appointment this week for a dexascan which measures the density of the bones. We also have an appointment with the ortho doctor to discuss surgical options for this osteonecrosis and an appointment on saturday for an mri of the hands because she continues to have a lot of pain there. The pain doctor recently spoke with the orthopedic doctor to discuss the amount of pain medications that Colleen is needing. There is a procedure called a core decompression which may help the pain but it involves drilling into the hips and femur and drilling out the middle and placing a metal or plastic piece in that area. Please pray for wisdom for the doctors as we continue to move forward. Colleen needs relief from this pain and we are all in need of relief from the added stress that this has caused our family.   I have some pictures to post but cannot find a card reader at this time. I will try to post them sometime this week.
      Happy Easter to our friends and family. The fact that Christ loved us enough to die on calvary to pay for our sins is phenomenal. We just have to accept him as our Savior and we will spend an eternity with him. Our pray for every person we know and love is that they will have a personal relationship with God and spend an eternity in heaven with him. Our God is awesome. We look forward to the day when we enter heaven's gates to spend eternity worshiping our Lord and Savior. An eternity free from suffering and full of joy. 

Improved pain - divine intervention?

We are pleased to report that Colleen's pain is finally tolerable. She is currently taking oxycontin 120 mg's three times per day. She is having trouble staying awake long enough to get homework done or to go to school. She is trying but has to take naps at school. She is also on neurontin 900mg's per day for nerve pain and elavil at night for nerve pain. She is sleeping 15 to 18 hours per day. The neurontin can cause drowsiness for a few days but we started that last monday. I was unable to get her up to go to church this morning or to go to school a few days last week. I am going to call the pain team at children's hospital tomorrow. Please pray for wisdom for the doctors so that we can get her on different meds that will not cause so much sleepiness. 

     She was scheduled to begin osteoporosis meds on thursday of last week to help her bones heal quicker. The only side effect which is remotely possible is osteonecrosis of the jaw which is very painful. No other children have ever developed this side effect, so we felt comfortable proceeding with the medication. The day before she was scheduled to start this medication, Colleen and I were sitting at the foot doctors office waiting for an appointment when a nurse that i used to work with walked in and we began talking about Colleen. She began telling me that her husband had developed osteonecrosis of the jaw from osteoporosis medications. She proceeded to explain that this was extremely painful and caused him much agony. I began thinking about this after our discussion. What are the chances that someone you know would sit next to you the day before your child was scheduled to start this medication and just happen to have a family member with the same problem? After further discussion with Len and the doctor,we decided not to go forward with the treatment. I feel as though God was directing our path to prevent this problem for Colleen. Chelsea thinks I am crazy but what are the chances that this would just happen randomly? The problem only occurs in 5% of adults that take the medication. I believe it was divine intervention. Call me crazy but God is good! Please continue to pray that her bones will heal quickly and her bones will stay intact and no arthritis will set in. Thank you!!!!!!!!!!!

Continued pain and frustration

Colleen's pain has improved but is still significant at times. She is having trouble staying awake because of all the medications that she is on. She is using a wheelchair at school and is on massive amounts of pain medication. Currently she is taking oxycontin 80 mg's every 8 hours and immediate release oxycontin 10 mg's every 2 to 3 hours. Her hips, legs, knees and now her hands and feet are hurting her.She is also on neurontin and elavil for pain which make her sleepy.  Please pray that God will halt the progression of the bone death and begin to heal her bones. She is about a week behind in school which causes a lot of anxiety for her but she is just unable to focus long enough to get much done. We are hoping that the pain medication will be increased this week. If her pain is controlled it is easier to do her work. 
     Chelsea and I went to a fur angel meeting this week to see what we need to do to train our dogs to be hospital therapy dogs. We are going to investigate a few more organizations and then decide which to participate with. For now, we have a lot of work to do with our puppies. They are like toddlers- in to everything and irritating at times. We still love them but we have a bit of work to do with them before they will pass any obedience tests. 
     Your prayers are appreciated. It is really hard to watch your child suffer in this way. She is really emotional and is having more trouble dealing with the pain than with the original cancer diagnosis. Please pray for our whole family. I seem to cry so easily. We are looking forward to having her feel better but this problem does not go away quickly. We may be looking at months of healing. 

New information from Doctor

I spoke with the ortho doctor today and he stated that the hip joints on both sides are intact. They have not collapsed at this time. I also spoke with the oncologist who states that Colleen's bones do show new areas of bone death or osteonecrosis. The steroids that she received have caused this problem. We are so thankful for the fact that God answered our prayers and her bones are structurally intact. The oncologist states  that the problem may get better but it could get worse. We have to monitor the bones but our focus right now is to manage the pain. They are currently researching the use of  osteoporosis meds to help stimulate bone growth.  Next week they will check vitamin d levels and soon do a dexascan to check the bones. We are not out of the woods yet. This problem could still progress. Please pray that God will restore her bones and heal them without any further problems. We are thankful for the fact that our Father in heaven hears and answers our prayers. Thank you so much for praying!

Update on pain

     Colleen went for her MRI's of the hips this morning at 6 am. She waited over 2 hours for her tests and then the nurses had trouble accessing her port. She was not pleased and was frustrated because  they had to try to access it three times without numbing cream. She was upset to say the least. We are glad the mri's are done. We should get the results in the next few days. They will be able to let us know if she needs surgery based on the mri results. 
     Her pain must be improving because she wanted to go out for lunch and was much more social today. The spark is returning to her eye. She is still having pain but it seems to be improving. She is going to try to go to church this evening but seems really tired from all the drugs she is on. We are trying to focus and take things one day at a time. When we are first told about these complications, it feels  like someone pulls the rug out from under you. It takes a few days to wrap your head around the news. We seem to be adjusting and are trying to take life one day at a time. Colleen's make a wish trip is scheduled for May 23rd thru the 28th and we are looking forward to the trip. Hopefully her pain will be controlled and she will be feeling better. Thank you for praying for her. Her headache is gone and the pain is improving a bit. 

More Challenges Osteonecrosis

This week has been very tough for Colleen and our family. We found out a few months ago that Colleen had osteonecrosis. This is caused by the high doses of steroids that are given as an anticancer drug. Over time the steroids cause decreased blood flow to the bones which causes bone death. She originally had this problem in the knees and the doctors felt it would resolve in time if she was taken off of those steroids. She seemed to be doing well up until about 2 weeks ago when the pain got worse. Her hips and knees began to hurt. The pain has gotten progressively worse until walking is unbearable for her despite being put on large doses of narcotics. We went to see both the ortho doctor and the oncologist on friday. The ortho doctor feels that the osteonecrosis is progressing despite the fact that she is off of the steroids. She now has it in both hips, knees legs and now her left hand is beginning to hurt. The oncologist states that most kids get better when taken off of the steroids but a very small percentage get worse. Colleen has once again fallen into the special category- the ones that get the worst side effects. The ortho doctor states that knee replacements are less likely but when the hip is involved it is more likely to require replacement. We have a mri of both hips tomorrow am at childrens hospital. Please pray that the hip joints are intact. If they are intact no surgery is required but if the joint is compromised, it will require extensive surgery basically hip replacements. 
     She has also been having a lot of pain. We have an appt at the pain clinic at Children's Hospital on Wednesday. Please, please pray for wisdom for the doctors and for relief soon from this terrible pain. They were able to put her on toradol which seems to be helping a little but she is still unable to do homework or go to school We are hoping she will be able to go to school on monday in the wheelchair. Thank you for praying. 
     Colleen is very excited to announce that she is putting a team together for the annual leukemia, lymphoma walk at the zoo on June 29th. She is having shirts designed for our team which will be called leen on God. If you can participate, she would be thrilled. It includes free admission to the zoo for the day and only requires that each person raise thirty dollars each. Her goal is to have the largest team there. We will post more details when we find out more. Please contact us via facebook. Len or Tammy Stewart Thank you Tammy 

One year anniversary

Today marks the one year anniversary of Colleen's Leukemia diagnosis. Our hearts are over-flowing with thankfulness to our Lord for answering our prayers, giving us the strength to get through the most difficult time of our lives, protecting Colleen and comforting our family. 

     I am awed by God's sovereignty and his work in our lives which helped us to prepare for this trial. I have had numerous nursing jobs over the years in surgery, oncology, hospice, neonatal nursing and home health care. I had knowledge of ever phase of her care which helped alleviate anxiety. I was able to advocate for her when she was having a lot of pain, I knew exactly what needed to be done. Chelsea was also forced to change her major to chemistry education because of a health issue and she was able to tutor Colleen. I also see that having a child 10 years older than Colleen was really beneficial for all of us. There were 3 of us to take turns at the hospital and we made a great team. I knew about the care Colleen needed and Chelsea was able to explain the molecular or cellular changes that occur with leukemia. Many of the physicians would ask her why she did not pursue medicine. Chelsea also chose Wayne State University which is right next door to the medical center so she was able to continue going to school and help with Colleen. We know that the steps of a good man are ordered by the Lord. Sometimes we go through life sort of blindly but we are grateful to our Savior who loves us and directs our steps. 

     We are thankful that Colleen was diagnosed so quickly. Most diagnoses take longer to find. Colleen developed a blister on her thigh which was really painful. She went to her pediatrician who felt it was a viral infection. When the blister was still there 2 days later we were sent to infectious disease doctor at children's. Our pediatrician called that department who had an appointment available that day. I worked in the pediatric office at the time, and getting an appointment was usually a real challenge. She saw the infectious disease doctor that day( who also had leukemia as a 14 year old and now was a 32 year old physician). She ordered blood work which showed a very low white count. We were referred to the hematologist the next day who felt that this was probably a virus. He also felt a bone marrow test could wait 2 weeks. I felt this was too long and wanted the test right away. The next day January 18th 2012, we found out she had leukemia. Treatment began that night at Children's Hospital of Michigan. 

     The goal of treatment is to be in remission within 4 weeks and the quicker a child responds to the chemotherapy, the better their long-term outcome. At the 3 week mark, Len told the doctor that she would be in remission because many were praying for her. She cautioned that this was way too lofty a goal. We were elated to find out that God had once again answered our prayers and she was in remission 1 week early. Tests were run to find out the cytogenetics of the leukemia. When the tests came back, they showed that she had the easiest type of acute lymphoblastic leukemia to treat and it was 90% curable. It seemed at every turn that the Lord was encouraging us and reassuring us that Colleen was going to be fine. 

     Colleen began having debilitating headaches a few weeks into treatment. A reaction to the methotrexate chemotherapy progressed and caused an area of the brain to die causing paralysis on the left side. I remember kneeling on the hospital floor at the foot of her stretcher sobbing and pleading for God to heal her. The paralysis lasted about 14 hours and then the movement returned. God had once again answered our prayers. She was finally well enough to go home about a week later. A few days after coming home, I came home from work for lunch and found her acting really silly and rolling on the floor. I called the doctor who instructed us to bring her to the clinic. Just as  Chelsea arrived to the clinic, Colleen began having seizure like movements and it took 5 nurses to hold her down. A rapid response team or code team was called to the clinic and she was transported to the ER. We are grateful for God's timing and for the fact that this did not occur in the car when Chelsea was alone with Colleen.

    The social worker called me at the clinic and told me that Colleen was not doing well. I was terrified, she would not tell me what was going on. To a nurse this means your child is on a ventilator or dying. I was relieved to find out that it was just a seizure. We found out later that the damage to the brain caused the nerve impulses to the body to be disrupted. We prayed again for God to heal her and within a day, the doctors found a medication to stop the movements. We thank God for giving our doctors the wisdom to care for Colleen since less than 2 percent of children develop the methotrexate toxicity and the head of neurology had only seen this problem in adults and only once in 35 years of medicine. 

     Colleen battled nausea, vomiting, headaches, and severe foot pain but through it all we felt God's never-ending love and comfort. Just before we reached maintenance, Colleen developed a blood infection. We went to the clinic and the doctor on duty was very surprised that this was Colleen's first infection. He actually congratulated our regular doctor. We thank God for keeping Colleen free from viruses and infections during this time of intense chemotherapy. 

     In closing, this year has been tough for Colleen and our family but we are grateful that God was able to use this trial to strengthen our faith and to allow us to demonstrate  his love to others that we would not have met without having this illness.

     Once again we would like to thank each and every one of you who said a prayer, who sent a meal, who cleaned our home, sent a card, who encouraged us in anyway. Your kindness is greatly appreciated and will forever be etched in our hearts. We also praise God who gave us the strength to get through this trial. Please continue to pray that the cancer will stay in remission. 

    Colleen is back in school with her friends, her hair is growing again and her leg pain caused by the steroids is improving and we praise God that the area of the bone that is affected should not cause any long-term damage. I will post some pictures tomorrow of Colleen and our new puppies.