Patrick's Transplant

Our son was four and a half when he was diagnosed with Chronic Neutropenia. It was an unknown condition to us, but we soon found out all we could. In Australia there is little information readily available other than what your doctor can tell you. We were given no written information and so we really did not know very much about precautions we could take other than those which were commonsense when you are told your child has little defense against bacterial infections.

We plodded along for five years coping with his condition thinking that we were okay and the situation was manageable until May 1998. On Mother's Day, 1998 we noticed Patrick was very pale and after going to our doctor and a blood test was done and he had the first of many blood transfusions. Again, we though fine, we can cope with transfusions, as long as our son is okay. A bone marrow biopsy was performed the following day and when the results of this test came back our world was shattered. The doctors sat my husband and myself down and calmly told us Patrick had a rare condition known as Myelodysplasia and required a bone marrow transplant as a matter of urgency, no, there was no other treatment and we only had two options. Our beautiful little boy was in a bed on the ward down the corridor and here were three men destroying every ounce of security we had. We had never heard of MDS, where on earth did it come from.

Again, we were unable to find any information about this condition other than from our doctor. How does such an innocent child deserve to get two rare medical conditions. We read books, spoke to people, but nobody was able to say anything we needed to know. I came across a woman called Lorna Stevens through the internet and suddenly felt I had found what I had been looking for. Somebody who knew what I was talking about. Approaching a bone marrow transplant for our child has to be the most frightening experience of my life. For us it was probably a bit easier than for those who have options of treatment. Our choices were do we or don't we. Our doctors told us that if Pat did not have a transplant he would die, no if's, and's, or but's. That was it. The choice was made.

The wait then commenced to find a suitable donor. We have two other sons from my previous marriage and after testing was done on both of them and our extended families we did not find a match. Originally we were told the transplant was needed within three months, but already we were four months from diagnosis. The transfusions were a monthly occurrence now, but we were reassured that Pat was coping and time was on our side to find a suitable donor before a transplant would be feasible.

In January, 1999 we were told of a possible match in France after a search of the World Register. Some children we had met during our time spent in outpatients clinic would tell of their search coming up with 60 possible matches - here we were with one. What had we done wrong was a questions we often asked ourselves. We then appealed for friends, work colleagues, university students, etc., to be tested for a possible match. We were amazed with the response and the Bone Marrow Registry tested over 2000 people through this appeal. In May 1999 the hospital contacted us to say two Australians had been found and looked promising. Both turned out to 6/6 matches and one was as good as the other. We were so excited with the news but at the same time the anxiety began. It made the whole situation real. We had fallen into a false sense of security of having transfusions and checkups, we felt we could go on like this forever, forgetting that for Pat his condition could alter at any time to a point where nothing could be done.

In the last week of July we received the call we had been dreading. The transplant was scheduled for August 17 and he would need to be admitted on August 8th. We were counseled in what we could expect with complications and what would happen from here on. After walking out of this discussion the doubts began - are we doing the right thing. Because there was no alternative treatment for MDS the choice was made, but still the doubts were there and were very real. The stress was unbelievable, we just wanted to protect our son. We had little time to get organized and it all seemed to happen too soon, even though we had known for a long time this day would come.

The day of admission was horrible, my husband and I cried together when alone with each other that morning and had trouble concealing our emotions from the children. We were trying to keep them positive and look at this day as the start of a new life for Patrick. We drove to the hospital and even when parking the car, I was ready to change my mind and forget the transplant. The possibility of losing Pat during the transplant was very possible and if we let nature take its course the doctors had told us he may have another couple of years. They didn't know how long, but at this moment two years seemed a lot better than possibly losing him in the next two weeks. But, if the transplant worked he had the chance of a normal life, something we dreamt of and had worked towards. We had to give him this chance. Admission was done and that night the first of the conditioning drugs was given. The same doubts were still there and I was still ready to cancel everything moments prior to the IV starting. Now there was no turning back.

The ten days of conditioning passed with much vomiting and diarrhea, but in all was fairly uneventful and Patrick was coping well. What had we been worrying for? The transplant day arrived and at 10:30 p.m. the donor marrow was infused, Pat slept through this time and my husband and I watched as each drop went through the line in silence. It was only a very small amount - 80 mls as the donor was of a different blood type. There were medical staff standing by in case he had a reaction and went into shock because of this. Fortunately, this wasn't the case and things went smoothly.

The following days brought with them a change in things. Pat was getting sicker and sicker and more drugs were added to the already long list and more and more antibiotics were given. He was now on the critical list and his temperature stayed around 41C for 5 days, how long could he cope with this. Tests were done, xrays, ultrasounds, and constant monitoring of his condition. The staff were supportive and the doctors reassured us "he's doing okay, this is what happens". Not to our precious son it doesn't, but it was. Then, one morning, we came back from having a few hours sleep to find his room full of medical staff as he lay on the bed so still. This was to one of many times when his blood pressure would drop very low - how much longer would this go on for. Surely, he can't be strong enough to cope with this.

With each day we waited for the blood counts to come back but for 18 days we sat and were told he had "not yet engrafted - but don't worry - that's normal for this stage". Finally, on day 19 the blood results showed some sign of promise. Day 22 he had engrafted and the neutrophils flourished from then on. With the engraftment Patrick made a steady recovery from the infection that had nearly beaten him.