I am beginning to have a new found respect for bloggers. How do they find the time to blog every day? Our blog was going to be how we kept all interested parties up to date with our progress but so far I know I’m always behind.
Ethan hasn’t had chemo for 2 1/2 weeks now. The last week has been the best week we’ve had in a long time! It hasn’t been perfect. In fact we’ve had some very trying moments and days. It has been good because we have had snippets of the old Ethan back. He seems more and more like himself each day. He has been able to do a lot more – a couple of weeks ago he didn’t have more than an hour up and about each day whereas this past week he has been playing and doing more. We have been able to go out for little things (we went shopping for new sneakers today) and he has been able to come to all of church with us for the past two weeks in a row. He kind of lies around while we are there but it is still nice to be together as a family. We have also managed to get a bit of school work done each day (only if a good reward is on offer and a lot of my patience is given, worksheets at home are not as fun as being at school with friends). He is still VERY clingy and wanting extra special attention though.
We went to the hospital last Monday for a blood test. His neutrophils were only 0.4 so he was unable to get chemo. So we were told to come back on Thursday as they should be well beyond the 0.5 requirement for the triple dose of chemo. So we went back on Thursday (first we had his school photos which the school was very nice to let his class go right on 9 am so Ethan could be in his class photo) and his level had actually dropped back to 0.3. They decided that we would wait a whole week before trying again. It is a bit of an anticlimax waiting around for a few hours in the clinic only to be sent back home again. We are due to go back again this Thursday. It has been a really nice break, although we know that the break will mean it hits him harder when he finally gets it. He has told us a few times that he is nervous about having the triple dose again. He feels better within himself and doesn’t want to go back to being really sick again.
Ethan still gets really sore nerves that will just hit him in his fingers or toes and last for 10-30 mins. The thing that gets me is the crying and screaming. His tolerance and ability to see reason has just disappeared so he will just start crying at the drop of a hat. When he is tired at night he will start crying. This really wears me down. It is hard to give Blaise and Vienna the attention they need when all of this is going on. Things have been better just in the last 2 days. This afternoon Blaise and Ethan played a board game and I was able to play ‘Doc McStuffins’ and barbies with Vienna for half an hour which made her day. After the board game Vienna and I laughed and sang as we watched the boys play a mini game of hockey in the kitchen using foam pool noodles and a hand ball. They only played for 5 minutes or so but it was still one of those special mother moments where my heart was touched to see my boys laughing and playing together. I’m learning more and more to be grateful for the small and simple moments.
Blaise has been amazing. I know some days are really tough for him but he hasn’t complained. I can only tell it gets to him from the look in his eyes. He is a bit of a deep thinker and nothing gets past him. He notices and feels everything. He puts up with a lot from Ethan. I think mostly Blaise has missed having his best friend to run around with. They have always done everything together. During the first month of chemo Blaise just stopped doing all the normal things because Ethan wasn’t by his side doing them with him. Now he goes out and shoots hoops or jumps on the trampoline by himself but I know he misses the normal companionship that they have always had. It is good for him to learn empathy while he is young. There are a few words and expressions that are banned in our house. One of them is ‘it’s not fair!’ No one is allowed to say that. There are definitely days where I wouldn’t blame Blaise for coming out with that line but he hasn’t. He goes along with whatever is happening and I am proud of him for doing so.
I promise to write again this week. I have some fun Halloween photos that I need to upload as well as a couple of other things. I was looking at a few photos of Ethan from earlier in the year before he was sick. 6 months ago we didn’t have a major concern in the world! I can hardly remember what it was like to see ‘normal’ healthy Ethan. Now he is our skinny, pale bald guy however he still has the same sense of humour and very clever wit. He constantly makes me laugh at the things he comes up with.
Jo-Anne Collier says
This is a courtesy reminder for your appointment with Jo-Anne. I’m looking forward to meeting with you tomorrow at: pray for your boy. I love you darling x
Jo-Anne Collier says
How did that just happened I just sent you an amazing comment and somehow I cut-and-paste something I sent something I send to clients ignore that and I’m going to try again rrrrr
Barb says
Jerusha, it’s been a very long time my friend. It’s good to read about how you and your dear family are going. I hope Ethan has many happy and pain-free days ahead of him and pray for strength for him, and for you all on the harder days. Lots of love to you all xxx
Kerry says
Always enjoy these updates Jerusha! Glad that you’ve been able to have a better week xx
Laurel says
Hey, we love you and we are constantly thinking of you all. We know your lives have just become even more hectic; however we know the whole family will be blessed as you continue to give 110%.
Monique says
I know what you mean about life being totally free of cares and then all of a sudden life is a different kind of normal. I love your honest writing style and am being uplifted by your faith. Thanks for sharing 🙂
Jerusha says
I hope life is going OK for you Monique!
Lynda Kramer says
Hi gorgeous family. Praying for great neutrophils and easier evenings. Love to you all, xxxx