Joshua Tree

A new beginning

After an excruciatingly painful and frustrating few days, Josh was taken to the hospital around lunch time yesterday, Sunday 17 May. He really did not want to go, and it was a decision that caused us, his parents, much anguish; but his condition had deteriorated beyond our ability to manage it from home. The nurses put up a drip and started the morphine, which calmed him down and eased the pain. We stayed by his bed as we waited for the doctor, who came at 16:30. While we were discussing the options for medication, Josh rapidly changed. For a brief period he was more alert than he had been since before the weekend. He couldn't talk to us, but he looked intently, deliberately at each of us as if to say, "I am going now, but it's alright." His laboured breathing became slower and his pulse weakened and quietly stopped at about 16:45.

The funeral will be held on Saturday at the Maitland Crematorium at 10:30, and the benefit concert that the school has been planning will now be a celebration of Joshua's short but beautiful life, that same evening at 18:00.

This has been a harder journey for me than I could ever have imagined, but Joshua has taught me more in the past month than I have learned in years, and I sense that we will learn much more as Lorraine and I deal with our suddenly reconfigured lives. Thank you to everyone who has been such a support to us and to Joshua. Through the dedication of many friends, Josh was able to live at home, with people who love him dearly, to the very last night.

not as hairy as he once was, but...

In some respects Josh's condition is getting better: his leg is steadily improving, his sores are not bothering him, and he is more active than he was on the first weekend of this month, which was a bit of a low point for him. And this photo, taken on Saturday, shows that his hair has finally recovered from the effects of the chemo.

At the same time, however, his lymph nodes are very obviously continuing to enlarge, and the ones in his neck over the past couple of days have started making it more of an effort to speak clearly. While the resulting pain is manageable with the pain killers he has been using (only at night), the pressure from the nodes makes it very difficult to find a comfortable position, awake or asleep. He has managed the feat of sleeping sitting up, sometimes with pillows on his lap to support his head. He also has a sore in his throat that sometimes makes it painful to eat, and he is getting thinner despite a supply of liquid nutrients.

A brighter day

On Friday - a public holiday - Josh's teacher came by to give him three posters that the class had created for Josh. They are like patchwork quilts, each with a theme but made up of individual squares. Beautiful, and a touching display of caring. The picture above is a portion of one. You can see all three in the photo album.

Josh has had a difficult time these past few days, but today he was more alert and interactive, and even the weather was sunny. It's too difficult for him to leave the house, unless absolutely necessary. There is nearly always pain in his back or chest. Some ailments continue to bother him, but others continue to show signs of recovery.

Niggling ailments

Over the past little while the sores on Josh's legs have refused to heal completely, and the problem with his thigh has not gone away. He has a sore on his foot that was making it difficult to walk; his foot is still swollen from the infection, and now the tight hamstring has changed into a swollen mass with a texture that Josh describes as 'putty'. Since last week he has been walking with crutches, and now he can't put any weight on his left leg at all. For a while he has had a red rash in places all over his body. Some of the rash looks similar to what he had when his platelet count was low, but on his foot and a few other places it looks like something else. It may be a reaction to some of the alternative medicine (see post on 21 April), so we have stopped that and there seems to be a slight improvement, but the rash is still there.

This morning during a bath, he suddenly came out with very itchy raised hives over almost his entire body. He first had something similar before he was diagnosed with Lymphoma, which would emerge sometimes when he would go outside at night, but it was never as widespread as this. This morning it was unbearably itchy, so with this and the various other ailments we took him to a doctor today. It's a public holiday in South Africa, so we had to go to an unfamiliar GP at a walk-in clinic.

The doctor suggested antibiotics for the infections, so Josh will start those (Augmentin SR) today. She couldn't say for sure what is causing the swollen thigh, but it could also be an infection. Josh also has a temperature, and his heart is beating unusually fast, which could be a result of the fever.

By this afternoon the itchy rash had settled down, and painkillers are keeping the pain from the swollen lymph nodes in his abdomen under control (he resumed taking Doxyfene last week). The nodes are clearly swollen and pushing on his muscles, but haven't increased in size lately, so that's a good sign. These ongoing challenges are stressful for all of us, and Josh is finding it hard to deal with. None of these things is necessarily serious, but they are incredibly frustrating for Josh who wants to get better, and for us who have to see our big, strong boy having to go through this. Tonight the antibiotics already seem to be helping, and the foot sores are improving. One day at a time.

Update on 28 April:

Some good news. The red rash has dramatically reduced, his foot sores are clearing up, and Dr Brom has prescribed some medication for the thigh and heart issues.

Tired but out and about

Josh has now ended his cortisone steroid course (last dose was on the 18th), but is beginning other medication as an alternative treatment. I will write more about that tomorrow. He has been managing without painkillers, and does not have abdominal pain, but he still hasn't gotten rid of the hamstring pain that I mentioned on the 14th, and now has quite a lot of pain when walking - or limping, rather. His left thigh is visibly swollen. With his weakened immune system, he takes ages to recover from any infection, and he has quite a few persistent sores. For about six weeks following his last chemo treatment, his hair has been dormant, but it is now growing apace.

Today was the first day of school following Easter. Josh did go for a short while, but was exhausted and came home early and slept for a while. He hasn't been sleeping well. In the afternoon we went to see Dr Brom and stopped in to say hello to the wonderful staff at the SA Journal of Natural Medicine.

Converging on a strategy

Josh has overcome the sinus trouble and is feeling stronger, but is tired from lack of sleep. (He has a sore hamstring that wakes him at night - no obvious cause.) It's still school holidays, so visits with friends continue when he has the strength.

We've been getting lots of advice from a range of sources - all much appreciated - and there are many healing approaches to choose from. Some sources reinforce what we have previously heard or read, with the result that some things rise to the top of the list while others drop to the bottom. What we need now is to converge on a regimen that takes a holistic approach with measures that are mutually reinforcing, and we are talking about that to doctors and other people we know who have gone through similar experiences, or helped others. In addition to taking medication and watching his diet, Joshua is being guided through the emotional and mental aspects that are important to healing in its broadest sense.

A great big thank you to all who have left comments here. It's wonderful to know that so many people are thinking about our family.

Phase two

Friday's CT scan, we learned today, shows that Joshua's lymphoma has spread rapidly to lymph nodes in previously unaffected areas, such as his chest. The focus up to now, and the target of the planned radiation treatment, was on his abdomen. With this spread, radiation treatment is no longer viable, since hitting only the abdomen will not kill the disease, and radiation over the full area where the lymphoma is visible would itself be lethal for Josh. Chemotherapy also is not an option, since the previous doses were very strong, and any further doses would severely damage the bone marrow. (In fact the lack of white cell production since the previous dose suggests that the bone marrow is not recovering as it should.) Without a treatment that can get rid of the cancer, a bone marrow transplant is also ruled out. From our doctor's perspective - but not ours - there are no more treatment options.

Joshua is in some pain now, and he feels aches and itchiness and sensitivity to touch, particularly on his head. He is tired, and has a cold with sore sinuses. The nodes are growing visibly, and he will continue to take steroids to keep growth to a minimum, and pain killers to do their job. The rest is up to Joshua, us his parents, and you his supporters. We believe that we can get through this, and will continue to pursue options.

this and that

 

Joshua has been active, gradually gathering strength, although he's had a few aches and pains in the past week. Today he and I got our bicycles back in action and went for a short ride. We went past the small neighbourhood park where he first learned to ride. It's the same as it was, except now has a fence around it, which was locked today.

He has been wanting to learn to weld for a long time, as it will give him the skills needed for building things like go-karts and other useful stuff (he bought a lawn mower some time ago for mounting on a bicycle, and he has started tinkering with that). One of his teachers is now teaching him welding at school, so he's pretty pleased about that. And even repaired a school chair.

still fine

Joshua's bloods were fine on Friday, showing an increase in white blood cells up to 6. He stopped taking Neupogen yesterday, so the white cells will drop back down. The idea is to get the body back to manufacturing white cells on its own, without the artificial stimulation. A week ago Josh weighed 53 kg. Still no schedule for the next chemo, and it's frustrating not knowing when things will happen. Meanwhile we've been having a heat wave for a few days, with temperatures in Cape Town close to 40 degrees. School was let out early yesterday because of it. Josh has been going to school on some days, but usually not for the entire day. The movie theatre is a great refuge from the heat, and that's where Josh is going now.

not much to report

Blood tests on Friday and again today show that the Neupogen injections Josh takes at home have brought up the white cell count (to 1.3 today) but the red cells are low, so tomorrow he is going into hospital for the day to receive a blood transfusion. There is still no indication of when the next course of chemo will happen, as it depends entirely on Joshua's body's response.