Fantastic Checkup

We went to see the doctor today, our local pediatrician, who we are seeing once a month right now. Ethan had a fantastic checkup, she is very happy that despite Ethan having a fever last week, he did not relapse. His urine samples continue to be trace, but she said that is okay. The best part of the checkup is that we discovered Ethan has grown over an inch since last month. Which is great news, as prednisone suppresses growth, his doctor and I were very excited to see such growth in only 1 month. Everything has returned to normal ranges, weight, blood pressure, and now he is growing again. So very happy!!!! 

Still Sick

Ethan still has a low grade fever, but his protein has come back down to a trace. YEAHHH!!!

Thank You to all those who prayed for Ethan as soon as he became ill, our prayers have been answered! I don't know how long Ethan's immune system will continue to be low after stopping the chemo and prednisone. It amazes me to see the difference in my boys immune systems, Adam only had a fever for 12 hours and Ethan is going on 2 full days. It certainly takes Ethan twice as long to get over things and he usually gets it worse than the rest of us. 

 

We are hoping that Ethan will be feeling back to normal soon and that this fever, won't trigger a relapse, the next few weeks are still critical after he has been sick. Thankfully we have a checkup with our local pediatrician next week, which will make me feel better to have him checked out. 

Sick

Well, it appears that Ethan has his first illness since he has finished all of his medications. Adam had a mild fever/flu symptoms 3 days ago and now it has made it's way to Ethan. I was very nervous as I tested Ethan's urine and sure enough, he is at 0.3 for protein. Which is still relatively low on the scale, but one never knows... Will the protein go away on it's own, or will this fever/flu signal a full blown relapse, and if it does, what is coming next??? Yes, I know I am jumping ahead, but it is very hard not to. I find these times to be the absolute hardest, the fear of the unknown. Please pray for Ethan that this will just be an illness that he will get over quickly and that it won't start a relapse.

Reflections

Summer time and the living is easy!!! We are now a few weeks into summer holidays and I must say we are loving it! It has been absolutely wonderful to have no schedule, no need to get up early, and I am loving not having to get up early and give Ethan all of his medications. In the last 7 years it has been primarily my job to give Ethan all of his medications, and I must confess that I am tired of it. I am sure Ethan is tired of taking it too! I am still daily testing Ethan's urine, he goes between trace and negative every few days. When we saw Ethan's Nephrologist last week, he asked me how often I test Ethan, and if I have ever NOT tested him in the last 7 years? I said I test him every day, but No, I have never NOT tested him, Are you Crazy??? He said, his goal is to get Ethan and me, to the point where we can go a whole year without testing. Wow, now that is a goal!!! I told him I didn't know if I could do that, it strangely gives me some sort of peace knowing what his result is, I don't know if I could relax not knowing. Also, testing every day allows us to detect a relapse long before it becomes out of control. In his defense, he said he was a true optimist, and I told him, that I am NOT. What a combination!!!! 

If you have seen Ethan lately, you will surely notice changes in him. Physically he has slimmed down, grown taller, he's had a big decrease in his appetite. Which is very strange, I am so used to him eating so much on the prednisone. I know I keep saying this, but we are so happy to see Ethan giggle and laugh. To see the joy in his face as he experiences life is so rewarding, we used to take him places and feel so discouraged, because all he did was complain that he didn't like it, didn't feel well, and that he just wanted to go home. If you know Ethan, he can be mischievous at times, Now, he loves to jump out and scare his older brother, just to see the reaction he will get. These may seem like small and normal things to other people but they are huge in our life, examples of life returning to normal. We are grateful for each and every day.

  

Strength for the Journey

Jeff and I celebrated our 14th Wedding Anniversary yesterday. In the card that Jeff gave me, the following words leaped out at me, and I wanted to share them with you.

" Don't worry that you are not strong enough before you begin. It is in the journey that God makes you strong".  

We had no idea when we set out on our married life that we would have a child that is chronically ill. We could not know the stress and toll that it takes on a family and marriage, until we went through it. I am so thankful that Jeff is by my side, and that we are walking this journey together. It is not easy, and there are days when it feels like we have lost our way. But God is faithful and he is reminding me at every turn that he is with us, and that he is giving us strength for this journey. I don't know if Ethan will be healed anytime soon, but I know that God will carry us through. I pray that Jeff and I will have many more years together, loving and caring for one another!

Children's Checkup

Ethan had his first post chemo checkup today at our Children's hospital. Ethan's doctors are very pleased that he is now off all medications. Ethan's blood pressure is normal, it was a bit elevated while he was on the higher doses of steroids. Ethan's doctors are also very happy that he is continuing to grow, despite the large amounts of steroids he has been on.  

As luck would have it, Ethan's nephrologist who we have come to love and trust, is having a baby. We were very happy to say goodbye to her today, as it was her last day of work before she starts maternity leave. I am sad that she will be gone for 1 year, but we couldn't be in better hands. We are going to be seen by the head of Nephrology, so what could be better? He has over 25 years experience as well, so I feel very confident that Ethan will be well taken care of in her absence. So for now, we wait! We wait to see if Ethan will outgrow this, or if he will relapse. Taking it one day at a time, and rejoicing in the fact that in this moment, Ethan is doing well. The doctors final words to us were" To celebrate every day that Ethan is off, and to not focus on the future".  I told him we were doing our best to do just that. 

Summer

Well we made it! School is over, both the boys had great report cards and will start Grade 3 and 5 in the fall. Adam is sad that school is over and that 2 of his best friends are moving away and Ethan is of course very happy that school is over. We are so happy that Ethan is doing very well, his urine samples continue to fluctuate between trace and negative. The comments that people keep making to us is that Ethan is smiling and laughing now, and it is true, it is a such a blessing and a sight to see. It is one of the things we miss the most when he is on prednisone. It really does suck the life out of a person. 

Ethan is looking forward to his first sleepover with his best friend in 2 days, he is so excited that he doesn't have to take any medicine while he is there and that he is feeling well enough to enjoy it. Which is one of the reasons we waited so long to plan this sleepover. We don't have any trips planned this summer, we plan to just take it easy, relax and have some FUN!  After so many doctors appts and lab tests, it has been so nice to just sit at home and do NOTHING! Although, I am sure the boys will start to get bored at some point, for now, we are enjoying a slow and relaxing pace of life!