Relapse # 22

We have been weaning Ethan from prednisone for the last 9 weeks and we had another 3 weeks to go until he would be fully off. Seven days ago when Ethan reached 10mg, we began to notice his seasonal allergies coming back. I don't know how to put into words how I knew, but I just knew at that point a relapse was coming. Even before Ethan's relapse in March, God was bringing people across my path, things I would read or come across all had the same theme, preparing me for something that was coming.

In February a full 6 weeks before Ethan would relapse, a friend of mine came to my door and gave me this scripture. She said God has laid it upon her heart to give this to me.

Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed for I am your God. I will strengthen you and uphold you with my righteous right hand".

I was so thankful for this friend and giving me this verse, I put it beside my bed on top of my Bible and every night and morning I would repeat this to myself. But deep down I questioned, why would God give this to me? What is coming that I need to be reminded of this. I was uneasy in my spirit every time I thought of this, until I began to say this verse to myself, then I would calm down. Little did we know 6 weeks later Ethan would relapse. Relapses hit me hard emotionally and really it affects the whole family. I didn't realize how much it affected even Adam until a few years ago. Having boys they don't often talk about their feelings, especially Ethan. Today for example he tested himself and he didn't want to tell me what it was, he wanted me to go and see for myself.  He never talked about the result either....  He knows I blog by the way, but he hasn't yet read any of my posts. I started this blog for myself and to give family updates. Maybe one day he will read this and then again maybe he won't.

So please keep us all in your prayers as we figure out what to do with his medications. Pray that Ethan can finish up the school year well. He finds concentrating and getting his assignments done much harder when he is on prednisone. He was doing so well at handing his assignments in until this relapse in March. Pray for the Doctor's to know how to best treat Ethan and that he will finally be able to get off prednisone. Waiting on the Lord once again to supply our needs and give us strength.

Children's Visit

Today Ethan and I made the trek into Children's Hospital to see his Nephrologist. The commute normally takes about an hour, but today there was an accident on the highway and we ran into all kinds of traffic so our journey took almost 2 hours. We were running late and I do not like to be late, so I was super anxious that they would think we weren't going to show up to our appt. I couldn't find anywhere to park and construction was causing all sorts of chaos around the Hospital and I am not good with directions and even though I have been there many times. I could not figure out how to get to the clinic with all the construction thus adding to my stress. As we were walking into the Hospital they were calling me wondering where we were. I did a big exhale as we finally sat down to wait to and poor Ethan all that rushing around and my anxiety gave him high blood pressure. They had to test him 3 times before it became normal. OOPS!!! 

I am so excited that we were able to be part of their new Nephrotic Syndrome clinic at Children's Hospital. This means that they have a lot more services available to us for support and we can see multiple people in one visit. We had a nice chat with the renal dietician about sodium and fluid restrictions for Ethan. If Ethan is in a relapse ( having protein)  and while on prednisone he is to have no more than 1500mg of Sodium a day. Which is not a lot when you think about it, and then you add in the fact that prednisone makes you super hungry. Ethan literally daydreams about food while on prednisone. It always makes me smile because off of prednisone he is NOT like that at all. I do feel bad for him though because the prednisone makes him crave the foods he cannot have, like hot dogs, pizza and chips... We do try to make our own pizza and foods for him at home which are lower in sodium so he doesn't feel like he is totally missing out. Although hot dogs and sausages I have yet to find a low sodium version!

The Doctor was very happy with how much Ethan has grown in the last year. They do believe one of the reasons Ethan could have relapsed is due to the fact that he had grown so much and the MMF was no longer strong enough for his height and weight. Allergies could also play a factor as anything that stimulates the immune system can cause a relapse. Jeff and both the boys were sneezing in early Feb and March due to the early Spring we were having. So that could be another reason but of course relapses can come for no reason at all as well.

They are going to increase Ethan's MMF to two pills a day twice a day and see if that helps. He will continue on the MMF as far as there are no issues for the foreseeable future. They hope that the increase in MMF will also help Ethan get off prednisone by late June. Ethan has had a lot of prednisone so they are sending us for an X ray of his Spine to check for fractures. Apparently in 10% of NS kids they can have small spinal fractures and not even know it. If he does have one, this would affect how they treat Ethan with prednisone in the future. Ethan has been complaining of aches and pains since starting on prednisone as it is very hard on the bones. But they were happy to hear that he is able to play volleyball and encouraged him to stay as active as he can. Activity helps them deal with the weight gain and blood pressure side effects of the prednisone. Not to mention being active makes one feel better, although many many times it is SUPER hard to get Ethan to do anything. Prednisone takes away his desire to do anything. But having heard it from the doctor will hopefully help remind him to stay active as possible. We are so thankful that despite everything, Ethan continues to have less issues than most. I praise God for small miracles like that, knowing it could be so much worse. I pray that one day my sweet boy will be free from all of these medications, tests and doctor's visits. Until then we will keep pressing on and putting one foot in front of the other. Trusting in the one who knows and cares for him so much more than we do.  Thank you all for your continued support and prayers.

Prayer Request

So it has been almost a year since my last blog post and I haven't had much to report until now.... After 14 months of being on this drug MMF Ethan has been enjoying a time of relief from prednisone. He has been enjoying eating things normal kids eat and that includes salty things he normally isn't allowed while he has protein or being on prednisone. He has finally been able to sleep and get into more of a routine in that department which has helped him immensely with functioning well at School. He has been feeling well enough to join the volleyball team and is currently playing club volleyball. He does get more fatigued than other kids due to the drug he is on, but it is much more manageable than we thought. This winter Ethan did get sick quite a lot, and that is also because of the MMF and the strong immune suppression. But during those times of illness Ethan rarely had any protein or if he did it was minimal and went away quickly.

So you can imagine our shock and surprise when Ethan tested himself this morning after seeing a lot of foam in the toilet and discovered that once again he is spilling a lot of protein. I have really relaxed on testing him and so it has probably been a month since I last tested him. So we really have no idea how long this has been going on. Earlier in the week he was complaining of being very tired and I have noticed that in the last few weeks he has been looking very pale and his appetite has decreased even more than usual.

So for now we will have to wait a few more days and then call Children's Hospital to see what they want us to do. It isn't a good thing that he relapses while on this MMF. Ethan is understandably concerned about going back on prednisone. We have so enjoyed these last 14 months of him being off prednisone. The side effects are so harsh and really change Ethan's personality and changes really everything about him.  So please join us in praying for Ethan that the protein will go away quickly before any medical intervention is needed.

Check up

This morning Ethan and I headed into Children's Hospital for a checkup. It has been two months since he has stopped prednisone and started this new drug. I have to say that Ethan is managing far better than I ever thought he would. They prepare you for the worst and tell you to hope for the best. So it was great to hear from his Nephrologist today that they are SO pleased with how well he is doing on the MMF. In the two months since he has been off prednisone he has grown 2 and a half cm. Which is fantastic, he has a whole year of growing to catch up on. His blood pressure was a little lower than normal this visit, and when I told them that Ethan almost fainted after being in the hot tub while we were in Maui over spring break. They said it was likely due to his blood pressure being too low and being in the hot tub too long. We had a fantastic time over spring break enjoying the sun and being with my family in Maui. We soon found out that the MMF causes sun sensitivity, so Ethan was a bit disappointed that he couldn't be out in the sun like he usually can. Even with a high SPF, he still managed to burn, but he came home with some color which is what he desperately wanted. His Nephrologist said that being in the Sun is really good for his bones, and he was happy that we had a chance to get away.

 Ethan is still dealing with a lot of bone and joint pain and his Neph hopes that as time goes on and he remains off prednisone that it will improve. So for now the plan is keep him on the MMF for the next year and then they will talk to us about weaning him. The hope is that the MMF gives his body a good rest from the steroids and that maybe he will get another few years off of everything. But he did say that Ethan could still relapse even while on the MMF and if he gets protein he will have to go back on prednisone. He has been sick once so far while on the MMF and they were pleased that he didn't get a fever or have any protein. Hoping and praying that continues. It has been an absolute joy seeing Ethan's true personality coming back, his smiles and sense of humour. I have really missed my son. Although he is very tired still, he is slowly finding the energy to return to sports and is enjoying playing badminton and club volleyball. Thank you all for your continued prayers, we appreciate it so much.

Update

I am super excited that Ethan had a great doctor's appointment this afternoon. His blood pressure and all his blood levels are in the NORMAL range!!! Which is amazing because the new medication can cause high blood pressure. He will have to get his blood pressure checked once a month. As well, his blood tests are all normal which is also amazing considering how the medication suppresses the immune system. His doctor advised that if he gets sick we will have to get his levels checked again to make sure they don't drop too much. But for now, we are celebrating that he is doing fairly well on this new medication. He continues to be tired and his appetite has decreased but his weight went up from last month, so maybe he is eating more than I think!

Tomorrow is also a big day for Ethan as he takes his last dose of prednisone. So far he has been negative for protein and has passed the point of where he has been relapsing. So we know that this new medication is working. We are hoping and praying that Ethan will finally be able to get off prednisone and hopefully be relapse free for awhile! I will keep you posted as to how it goes, but thank you again for your continued prayers. We really appreciate them, and I truly believe that God is using those prayers in helping Ethan. From reading other patient's stories, we know it could be so much worse. So thank you so much for your love and prayers!

Update

Tonight,  Ethan will move up to a full dose of the MMF that he has been taking these last two weeks. It is double the strength he currently has been taking. I am so thankful that these last two weeks have gone much better than we anticipated. Ethan has had some stomach pain and whenever I ask him how he is, he says he is tired. We have also noticed a big reduction in his appetite, some days he seemed to lose all interest in eating. Which is one of the side effects of the MMF, but it is weird to see him go from being super hungry all the time on prednisone to not really having much interest in food.

Ethan did come down with his first cold while on the MMF and Prednisone last week. I was super nervous about this, as I had no idea what to expect. So in a way, I am glad to have it over with and it gives us more of an idea of what to expect. He did get the cold more severley than his brother and it also took him longer to recover. But other than that, we are so thankful that the cold did not trigger any protein and he did not have a fever or any other complications. One less thing to worry about!

Tomorrow is also a big day for Ethan as he will reduce his prednisone to 1pill (5mg) every other day for the next two weeks. Then if all goes well at the end of those two weeks he will officially be finished with Prednisone. BUT, this is the dose that Ethan has been relapsing at for the last few months. So I have no idea what to expect. Children's did warn us that he might still relapse 1-2 times even with the MMF. Anymore than that, and they would look at switching drugs for him. So please pray for Ethan, that he would be able to handle the full dose of the MMF without any significant side effects. As well as we desperately want him off Prednisone, so please pray that he will be able to get off this time. Thank you so much, Laura, Jeff, Adam & Ethan

Children's Visit

Today was a big day for us as we headed into B.C. Children's Hospital to discuss with Ethan's Nephrologist putting him on another drug. I am so glad that Jeff was able to be with us, having another pair of ears to listen as well as to ask questions. So the big news is that after a lot of discussion, his Nephrologist decided to put Ethan on a drug called Mycophenolate Mofetil or MMF for short. It is a drug that they use in organ transplant recipients to prevent the rejection of donated organs. But they also use it to treat a variety of autoimmune diseases including, Nephrotic Syndrome. As it impairs the function of immune system cells that become overactive in autoimmune diseases.

From what I understand MMF is not a chemotherapy drug like the one he took 4 years ago. But it does and will suppress his immune system, even more than the prednisone does. Making him more prone to getting viruses and infections. It will also lower his blood cell counts so he will have to have blood tests to check that his levels don't get too low.

Ethan's Nephrologist assures us that this drug is well tolerated among children at their clinics. But I have to admit the long list of side effects is rather scary to read. They said the most common side effect is diarrhea and stomach upset. If that happens and becomes too bothersome, then we might have to change drugs. I did tell them that Ethan already suffers with a lot of stomach pain because of the prednisone and that he is taking medicine for it, which has been helping. He did say that once Ethan gets off  prednisone, he wants him to stop the medication to help his stomach as it won't do anything to help with the stomach pain caused by the MMF.  Unfortunately, there is nothing they can give him to help with that... other than stopping the drug.

The long term side effect that concerns me the most is that taking this drug increases Ethan's risk for getting certain types of cancers down the road. The down side of MMF is that Ethan will have to take it for at least a year and possibly even two. It was also disappointing to hear that Ethan may still relapse while taking the MMF. Which means that he would have to continue taking prednisone as well as the MMF. We were really hoping that he wouldn't have to go on anymore prednsione, that starting this new drug would help him to never have another relapse again. To be our miracle... But that doesn't seem to be the case, as his Doctor reminded us once again that there is no cure.

As we once again step out into the great unknown, I would ask for your prayers. Pray for Ethan that the side effects will not be too hard to manage. Pray that this new drug works, and that he will be able to be fully weaned off the prednisone with NO more relapses. Pray for good health for all of us so that we don't bring home any germs that would complicate Ethan's life anymore. Pray that we would continue to find our strength in Jesus and that this next step of the journey will bring us closer to him and to each other. Without a doubt, we know that God has never once left us on our own and we will trust in him to get us through this next year. I will update you as I can to let you know how he is handling this new drug, Thank you for praying, lot's of Love, Laura, Jeff, Adam & Ethan