Decisions

Patrick and I haven't had much of chance to talk but he knew I was pushing for us to return to the States. The weeks apart have been so hard for both of us, and as my good friend Mia has said we both have been fighting the same war but in different trenches. There is no way I can even begin to know what he has gone through caring for Rafiki alone and not letting him out of his sight for even a second. The first month was the hardest when Rafiki was on Dexamothazone, steroids.

Dexamethasone (also called Decadron¨) is a man-made steroid medicine. It works like a natural steroid that is made in your body. This medicine has several uses:
• to relieve inflammation (swelling, heat, redness, and pain)
• to treat certain types of cancer
• to treat severe allergies and asthma
• to treat nausea and vomiting


Rafiki was a hand full feeling all the side effect that the drug has to offer. Eating all the time, not sleeping, grumpy, moody, and also in a far bit of pain not able to walk. The nurses at the hospital call kids on the drug DEX babies.

The side effects seem endless but it is very effective with this treatment

Possible side effects
Early
• Stomach irritation (burning)

Late (usually more than a day after treatment starts)
• Headache
• Dizziness
• Changes in personality and mood
• Increased appetite
• Problems sleeping
• Acne
• Eye problems (cataracts, glaucoma)
• Weight gain, mainly in the face and abdomen
• Water retention that can increase the blood pressure
• Increased white blood count, but decreased numbers of infection-fighting cells
• Increased blood sugar levels
• Decreased potassium levels in the blood, especially if you are taking other medicines that also decrease potassium levels in the blood

After taking dexamethasone for a long time
• Decreased muscle mass and muscle weakness
• Impaired wound healing
• Decreased growth
• Thin fragile skin
• Weakened bones

In and out of the hospital Patrick is not one to ask for help in any capacity. He takes all the burden himself rather than burden someone else even though there is a long list of people would love for the opportunity to help.

We finally decided that we would return to the States sometime mid-May. Over the last 6 weeks of being separated I have thought and rethought about the decision to stay in England or move back to the States. I have come to realize that no matter which decision we make there will always be a price to pay whether that is financial or mental. We aren't going to get out of this situation without paying a price somewhere along the line. Of course this doesn't even take into consideration the price Rafiki pays as a sick child every day.

Since the beginning of this journey, the medical staff here in England have been incredible.

Southampton General Hospital
http://www.suht.nhs.uk/index.cfm?articleid=1694

Dorset Community Hospital
http://www.dch.org.uk/


Although both Patrick and I have been out of minds with worry for our son the doctors and nurses never gave us anything more to worry about. They have always been confident, clear and comforting dealing with us. They reassured us at ever step often easing our fears about the future and Rafiki's treatment. To be honest the hardest part of this journey was in the beginning, not knowing or understanding and carrying the hope that this was all a big mistake, the denial was overpowering. I think in some ways I am still in denial as I have missed such a horrendous part of the treatment and I see my lovely little 2 year-old old running around, playing and laughing and trying to keep up with his cousins.

When I thanked one of the many wonderful nurses, Leigh Shaw, she said it was just her job. Although that might be the case there aren't enough thanks that can go out to these wonderful people.
They are sure we will get the same treatment back in the States but again the unknown is the hardest part. My only regret I have is that I didn't get pictures of all these wonderful people to bring home with us.

I have begun to see Rafiki again in his new body He has lost a lot of the weight and puffiness he got while on the DEX. I have realized that the little boy who went to Zimbabwe in February of 2008, is gone, and he would have been gone regardless. He is growing and the cliches about it happening so fast are true. He is going to be growing while he has this disease, and when we reach the other side he will be a whole new person. He will be a whole new person in 3 years time even if he weren't' sick. I carry the image a friend of mine gave me imagining Rafiki walking through the doors into his first day of kindergarten a totally healthy little boy.

I have been anxious to return sooner than later as I feel we will need a lot of time on the other end to settle in. I have been pushing Patrick to make a decision and I haven't been as gently as I probably should have.

We decided that once Rafiki had his Minimal residual disease, MRD test( MRD stands for Minimal Residual Disease. It is a term that simply put means that they detect leukemia cells with a much greater sensitivity than they did in the early days of childhood leukemia treatment. Instead of looking at 100 cells and finding 1 leukemia cell, they can now look at 10,000 cells and find 1 leukemia cell. this is a great place to get a better understanding for the MRD http://atlasgeneticsoncology.org/Deep/MinResidDisID20007.html)

and we had a chance to talk to our consultant, Dr. Janice Kohler, who is an amazing woman and doctor. We would make plans to go. We won't receive the results for a few weeks but we do feel confident that we are still in remission.
As we waited for Rafiki to be called for his treatment at the hospital last week, we were able to talk to Dr. Kohler who first indicted to us that Rafiki is doing very well and right on track with where he should be. She was impressed with how he looked and was acting. I believe it had been about 3 to 4 weeks since she last saw him and he was quite the different little character both physically and mentally.


She knew I had been doing research in the States to find out about treatment there and what our options were. She asked what I had found out and that is when I told her we would be retuning to the States. It was a very difficult sentence to get out and I could see Patrick's eyes well up a bit with tears. It is amazing how you bond with people in tragedy and I think Patrick considered the staff at both Southampton General and Dorset county family if not even angles and saints.

We realize we are taking a risk by moving and I think we are both anxious about the trip and the future.
I have booked a ticket for us to return to the States on June 11th. I feel a bit nervous in that if Rafiki's health changes in the slightest we may have to cancel our flight.

Our lives are completely about one step one day at a time now.