Other things may change us... but we start and end with FAMILY

Saturday, August 16, 2008

Jonah Update

Here is a note from Lauren ( Jonah's Mom) with an update about Jonah. We need to continue to keep this family in our prayers....

I've heard the phrase 'information overload' in the past, but I don't think I've ever experienced it quite the way I did yesterday. Dr. Grant, an oncology specialist who works specifically with Wilms, visited us in the early afternoon. Unfortunately, the pathology report was not completed at that time, but he was able to give us most of the information it contained without the official documentation. I'm going to try to give you as much of that information as I can remember without writing a novel. Firstly, the diagnosis of Wilms was confirmed. This was no great surprise, but as the doctor continued speaking in a kind, yet very serious tone, we learned that things are not as good as we'd hoped. While Jonah's cancer has a favourable histology, the pathology team has discovered that it has already progressed to Stage Three. This means that it has spread into the lymphatic system and, although we know through CT scans and ultra sounds that no tumours have yet formed elsewhere in his body (i.e. his lungs, which would call for a Stage Four diagnosis), the cancer cells themselves are most likely travelling through his body already.Okay. So what does that mean, right? First, it means that Jonah will have to receive radiation along with his chemotherapy. The treatment will take place over a fourteen day period. Each day, Jonah will be put under a general anaesthetic, laid out on a table, and zapped with radiation (which is basically just a huge X-ray machine). There are serious side effects and risks involved, including the development of cardiomyopathy (a heart disease that may not crop up until Jonah's in his late twenties), fatigue, skin damage, and muscle spasms.There are three drugs involved in chemotherapy. Unfortunately, as a result of the information overload, I am unable to remember their names; however, I'm sure we'll become quite familiar with them over the next few months. The first drug will be given once a week for ten weeks, beginning this Tuesday, in Toronto. The second and third will be alternated every three weeks. Chemotherapy attacks cells in the body that regenerate quickly, as cancer does. Unfortunately, there are other cells that also regenerate quickly. This is why chemo patients almost always lose their hair. The drugs cannot distinguish between a cancer cell and a hair follicle and therefore, it attacks both. Other common side effects, as I'm sure most of you are aware, are nausea, vomiting, fatigue, mouth sores, and constipation, as well as an altered immune system. This means that over the course of his treatment, we will have to be extremely careful about the germs (if any) with which Jonah comes into contact.Jonah's treatment will last 24 weeks. Thankfully, we will be able to do most of the chemo in Sudbury (which is just three and a half hours from the Soo) after the first few rounds here in TO. By the time the treatment is done, I will (hopefully) be 32 weeks pregnant. It’s important to us that we spend that time together at home. The good news is that, despite the Stage Three diagnosis, the prognosis is still good – about 80% of children with Wilms go on to live normal lives. Another 10% have a recurrence of Wilms, half of which survive. That doesn’t make the diagnosis any easier to swallow.Wilms researchers have also discovered what they believe to be a genetic link between children who develop these kinds of tumours. Wilms Tumours can occur as part of other rare syndromes, some of which cause developmental problems, rapid growth, and even mental retardation. Because it is quite possible that Jonah, and subsequently all of our other children, inherited these genes from both sides of the family, tests will have to be done to determine if genetic markers are present. If these genetic markers are present, Sofia and Baby Number Three will have to be tested periodically for Wilms as well. However, the doctor assured us that, although the chances of our other children having Wilms are higher than the average family, they are still very slim. Wilms itself is a rare cancer. In fact, one of our oncologists said that this is the first time she has ever heard of a child with Wilms on both sides. So, that’s where we are right now. I’m sure I’m leaving out a lot, but that’s about all I can write for today. It’s still so completely overwhelming. At times I have to remind myself that this is real; it’s not a movie or a Karen Kingsbury novel. Jonah has cancer. Deep breath...We’re staying with friends in Caledonia for the weekend and it’s such a blessing to be a real house again. It will be a nice break before Tuesday comes and reality hits again. We’re discovering what it means to trust completely in God, but still be overrun with confusing emotions; sadness, fear, and a fierce kind of love and protection. We don’t know what the future holds, none of us does, so for now we are determined to enjoy the time God has given us as a family. We are so thankful for all of your cards and letters and gifts. You could never understand how much your support touches our hearts. Know that God is using all of you to encourage us every day. Since Jonah’s radiation and chemo will be done on an outpatient basis, we are unable to receive gifts and cards at the hospital after this weekend. The hospital mail room is forwarding all mail to my parents house in the Soo or back to sender. Your cards, letters, and pictures are so encouraging to us, please keep them coming. If you mail them to my parents at the following address, they will be forwarded to us as quickly as possible.Jonah Booker c/o The Lucchettis132 Estelle StreetSault Ste. Marie, ONP6C 2C5Here are our current prayer requests:1. Peace and strength. My parents have taken Sofia home to the Soo with them, so it’s just me, Jon and Jonah here. It will be so different here without them to lean on. I’m going to miss Sofia terribly and I’m already grieving the time we’ll lose together. Next time I see her, she may be sitting up and eating solid foods. It’s so hard for me to miss those things.2. Strength to get through the treatments. Every time I think about what we are about to experience, about what we are about to watch Jonah go through, the sickness, the fear, losing his hair, it makes me feel nauseated. Please pray that God will give us the strength to see this through. 3. Please pray that the side effects will be minimal and that the treatment will eradicate all signs of cancer from Jonah’s little body. Pray for healing for our little boy.4. Finances and employment. We’ll have to call Jon’s job on Monday and see about getting a leave of absence of some kind for the duration of the radiation. Please pray that they will be able to work something out that is beneficial to us. We have checked out of the hotel and will be staying with Jonah until we can (miraculously) get into Ronald McDonald House, but the cost of travel and food is still high. 5. I’m going to need checkups and regular ultra sounds while we’re here. Please pray for the little life I’m carrying – for strength and health. Pray that I will be able to take the rest I need during this time.6. Praise God for the amazing staff at Sick Kids. We were blown away by their kindness and dedication. We feel blessed to be able to be treated there.7. Please don’t forget the other sick children I’ve mentioned (Emily, Yosef, and Nicholas) and their families. I’ve bumped into them from time to time and have continually assured them that we are praying for their peace and healing. We really appreciate you joining us in prayer for them.8. Accommodation. Jonah won’t have to sleep at the hospital during his treatment unless he catches a bug or an infection, so for the next four weeks that we are down here, we need to find a place to stay. We’ve had a few offers from friends and family outside of Toronto, so we have options. We are back on the waiting list for the Ronald McDonald house. This is our best option, so please pray that we get in quickly. If we don’t get in there, we will stay with friends or family in the surrounding area (London, Brampton, Guelph, Kitchener). The cost of gas to travel back and forth to TO will be high, but still less than paying for a hotel. Because Jonah’s immune system will be compromised, we need to stay away from public places (i.e. dorm style residences where we will have to share a bathroom, Wonderland (sniff sniff), etc), so that makes it a little more difficult. But not too difficult for God. Again, Jon and I thank you, from the bottom of our hearts, for all your prayers. We really can feel them. Please keep it up.

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