Welcome to Michael's web page!
This page will be used to update everyone on the status of our son Michael.
Michael is 5 years old, loves to ride his two wheeler, play with his sister Katie and dog Boomer. He has a very outgoing personality and loves to be involved with everything. He is a typical boy in all areas. He has no favorite food - he'll eat anything in sight. His favorite colors are red, orange, green and blue. His favorite movie is Spiderman, he is quite put out he hasn't seen Spiderman 2! Unfortunately he may not be able to participate in anything for the next couple of months.
He has had a normal boy's life up until now. We were concerned with how pale he was and he had been complaining about feeling tired. On July 8th, 2004, when we took him to the doctor, we were to take him for his first ever blood test and found out that he was very sick. The doctors told us that he had Pancytopenia, which meant his red blood cells, white blood cells and platelets were at critically low levels. This was the start of a very long couple of days. He was admitted to the hospital immediately and started antibiotics to prevent infection. Later that night Michael was seen by a hematologist who said Michael's bone marrow is not working and that's why the low blood counts.
On Friday July 9, 2004 he had a blood transfusion, bone marrow biopsy and a central line inserted. This was a very emotional and frightening day for him and us.
If he has to have the Bone Marrow Transplant, which we will find out on Tuesday July 13, 2004, it may take a long time for his recovery. This is all we know as of July 10, 2004.
Michael with a few of his favorite friends.
Michael also loves to camp.
July 10, 2004 - Michael has had a rough day today with his central line causing him some discomfort physically and as well as emotionally it scares him. He is in fairly good spirits, is eating and drinking well, watching TV and playing with his new Spiderman lego and toys.
July 11, 2004 - He had a good day today. He was in very good spirits and had a fair number of visitors who were able to perk him up. He had an additional transfusion to increase his levels to normal. The first one he had on July 9th did not get the levels into a normal range. This had a very noticeable effect on his color and energy levels.
July 12, 2004 - Michael has had a good day today. His blood work is better since his last transfusion. His counts are still a bit low but they are not critical at this point. He is becoming more and more anxious each day with his new found energies from all the extra oxygen he is getting with his counts being higher. Our test results have not come back as of today but anticipate everything tomorrow. Michael was excited to here that Pastor Ron, our churches (Midpark Christian Assembly) children's minister was going to visit today.
Pray for the health of Sharon and myself that we will not get sick and be able to maintain our schedules.
Pray for Michael and his growing restlessness.
July 13, 2004 - Michael had a good day today, had fun with his dad playing X-Box games and watching videos. Thankfully we received the biopsy results tonight and didn't another day, it was such a relief. The results confirm that he has Aplastic Anemia. Unfortunately he can't have the bone marrow transplant as his sister Katie is not a perfect match. The only other treatment option now is for Immunosuppressant therapy which he will start in the morning. The treatment takes 4-6 days of IV medications that should wipe out his immune system. The goal of this , is that when the body starts to regenerate the immune system his bone marrow will start to work again. Hopefully all goes well and we can take him home on oral medications on Monday. He'll be on a lot of dietary restrictions and cannot go where there are any large groups of people due to risk of infection. He is allowed to go outside and may even be able to spend some time at the lake if his blood counts look okay. We have alot of learning and lifestyle changes to make in order to prevent any infection. The doctor gives him a 70% chance of cure.
That Michaels treatment runs smoothly and he has few side effects.
July 14, 2004 - One down and three to go. Michael had his first treatment today. The drugs the doctor uses are very strong and caused Michael to have very strong mood swings. He also had a rash appear which could have been a virus hiding in his system. The doctor warned us that this could happen. Late in the evening he developed a fever and had to go through treatment for that. It may have been brought on as a reaction to the drugs or the virus' lingering in his system. Hopefully tomorrow will be a better day.
Pray for the strength of Sharon and I. Sleeping and eating are becoming struggles. We force ourselves to do it even if we don't want to. For Michael that today is a better day and that he will be back to normal soon. It is very tough to watch his emotional rollercoaster.
July 15, 2004 - Michael has had a good day today. If we keep him occupied and relatively calm, he seems to do better emotionally. Yesterday was as very bad day. I relieved Sharon at 8am. she came back at 1:30 after getting some sleep. I will be going back this evening to spend the night. Our long days with him are wearing us down so we are going to be taking shorter shifts. The doctor came by today and said Michael had responded well to the first days treatment. Thank you to everyone for your thoughts and prayers, it has helped us knowing we have so much support behind us. We feel such a sense of peace trusting that God will heal him.
That Michael's rash, headaches and fever do not return today.
July 16, 2004 - Last night we had issues with Michaels medicine lines. The central line blocked and could not be reopened. To correct this he would have to undergo surgery to put a new line in. At the same time, the vein his IV line is in collapsed and no more fluid could pass through it. They put a new IV line in early this morning to continue getting his meds in. The problem was the central line. It is the best was to administer the immunosuppressant. We were told that he would not be able to get to surgery until very late in the day and we were already behind schedule. The doctor asked if he could try to give it to Michael through his IV line, which had not been done before. We said yes if it will keep him out of surgery and if he could eat. It appears this will work however to put it through the IV line it takes almost twice as long to deliver. It was decided today that Michael will have one last treatment tomorrow. Michael has not had any adverse reactions to the last two days of treatment, our prayers were answered.
Pray for the general health of our family after Michael is home. We will have to be extra cautious of possible infections and any airborne viruses. We may have to wear masks at home sometimes if we are close to him.
July 17, 2004 - Today was a quiet day we played video games all day. Sharon and her Mom, with some assistance from Katie, completely cleaned everything for Michael's homecoming. He finished his last treatment today with no side effects so far. I talked with the doctor and he told me that Michael should have serum sickness in 7-14 days. This is normal for patients recovering from this treatment for it shows the signs of the serum leaving the body. Michael may have to be readmitted if the reaction is very severe. One of the problems we face is he may have to have bi-weekly platelet transfusions. Platelets only have a lifecycle of 2-5 days and this is only accurate if the platelets are new and not close to expiring. If his system does not kick in right away he may need to have another blood transfusion.
Pray that the platelet supply does not become hindered. These are not as readily available as blood. They also do not last as long. Pray that donors are available.
July 18, 2004 - Michael just wants to go home. He is still as feisty as ever. He has to take a special antibiotic tonight before bed. If he does not have a fever in the morning we will be able to bring him home.
Our prayers have been answered for the last few days. It was truly amazing to find the faith of friends and family so strong. I believe that God has called us together in his name for the sake of our little boy. Our faith has been tested and I have never felt such a strong presence of the Lord in me. I was told their are churches everywhere praying for Michael. There are churches from St. Johns to Vancouver praying. This is truly something to behold.
Pray for no reaction to his last medication. That Michael has success from here on. We trust that everything will be successful, however will still be trying at times.
July 19, 2004 -
After a long day of waiting for the go ahead, our prayers were answered and we were able to bring Michael home around suppertime! He was so excited to be home. It was so nice to have all of us under one roof again. Michael is fairly weak after spending 10 days confined mainly to bed, he also has started to "puff" up from the prednisone and it's also causing him to have a voracious appetite! He is on a low salt diet, so for someone who thinks ketchup is a food group, it will be a challenge. He cannot eat raw veggies and all his fruit must be peeled due to risk of bacteria. Bringing him home has now started a new phase for us in which we have to be very careful with his diet and do our best to keep him free of infections. The latter will be the most stressful, but we can't let him live in a "bubble" either. He already has a follow-up appointment for the 21st for blood work and possibly another platelet transfusion (his platelets today were 80, so hopefully he'll not need any till Friday). He has so many little bruises and marks from all his needles, that we pray he won't need labwork/transfusions too often. We want to thank everyone again for the amazing support we have received the past 10 days! God Bless all of you!!
Starting tomorrow I will update bi-weekly on the Weekly Update Page.
That Michael will be healed, he will not develop an infection/or catch a virus, he will regain his strength and that he will continue to be fiesty and strong. For Katie to not feel worry or fear with her brothers illness.
This site was last updated 07/19/04