15 out of 56

Well, we are 15 days (2+ weeks) into Delayed Intensification 2 which is 56 days long (8 weeks). This is the second to last stage before Maintenance. So far, Geli has had a Lumbar Puncture, one dose of Intrathecal Methotrexate (into her spinal fluid), one dose of Peg L-asparaginase divided into two shots (one in each thigh). She has had two doses of Vincristine and 2 doses of Methotrexate (both of those into her port in her chest).

ColoringShe has been doing pretty well. There have been some down times, some barfy feeling moments, and a lot of great moments. Some times the chemo makes food and water taste “off” and that sucks. Sometimes, it’s difficult to sleep and yet regardless of how much sleep Geli does get, she feels overly tired most of the time.

Her body is working overtime to heal and process the poison injected into it and she’s fighting so hard and most definitely winning this race.

Geli has been at school all last week, except for Thursday when she had to go in for her last chemo dose. She has no chemo this week and we are planning for another great week at school.

Sweet BoyAs her parents, we are thrilled to see her attending school, hanging out with her friends, just being as normal as is possible in this crazy situation.

She is working hard on her grade 8 school work and while she’s not done as much work as is required from her school mates, she’s done really well on keeping up to date with the essential assignments that her teachers have given to her.

Angelica and a friend scored a perfect mark on an oral presentation that they have been working on over the past month or so. That was definitely a bright spot over this last week.

We’ve been out walking most days and the exercise and fresh air are wonderful. You don’t realize how much you take your health for granted until you spend a huge portion of a year not feeling well and laying on a couch and then you realize that even a simple walk requires almost more effort than you have to give. BUT….summer’s coming and swimming is important Siah & Gelienough that we are trying to build up strength so that we will be able to swim without needing a life jacket or having to rest after 5 mins.

We are really, REALLY looking forward to summer. Angelica will be on Maintenance and we will be defining a new normal and this summer will be a most welcome break from this past year. I think that we are all looking forward to a bit of a relaxing summer.

I’ve been trying desperately to stay on top of the house and have been running at warp speed from morning till night and unfortunately most of the night too (thank you very much children). I’ve had almost no down time and I’m desperate for summer with no homework, a bit more of a relaxed schedule, once a month visits into the hospital, no deadlines……I can’t wait.

Snow DayWe have managed to turn our house up side down and I think its a good thing, BUT…..it’s not without it’s challenges. We did move our bedroom down to the basement along with the two little boys. Geli and Xani are up in what was the master bedroom. Jeremy is still is his room and we’ve moved the “TV/Rec Room” up to the big room that used to be Siah’s. I will try to get pictures soon, but so far this particular room arrangement is working well.

Xani is still struggling pretty hard and it’s difficult to watch her struggle and hurt.

Jeremy is rocking his Lego Root Camp and just being Jeremy. Recently, we tweaked the meds that he’s taking and it’s made a great difference.

ColoringJosiah is 3 years old and while the whiny voice and testing of behavior is not the most fun….he’s doing really well. I believe that he’s settled greatly from the initial chaos and while there are still things that we can and will work on with him….he’s doing SO much better. We’ve been trying to color a bit and he’s loves to spend one on one time with anyone. He stresses a bit about not knowing “how” to color and wants to have one of us color “with” him by putting our hand over his, but we keep practicing and he’s getting a bit more confident that he “can” color all by himself.

Judah is getting so big and I can hardly believe that 8 months have past us by. While I’m still not eating wheat (he seemed to have some gluten issues), soy or dairy….the intestinal issues that Judah was dealing with seem to have settled and he is doing much better. I have never really had a baby who has eating issues and yet, Judah is giving me a run for my money.

He will eat rice puffs or rice cakes or potato puffs any time any where, but try to give him some thing that might actually have taste or nutritional value in it and he clamps his lips and crosses his arms in front of his face and uses his arms in a windshield wiping motion to knock the spoon out of your hand.
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I’ve tried to see if he will feed himself and it’s very hit and miss and so I’m not stressing about it too much because I don’t want to “create” a HUGE issue. He’ll eat when he eats and seriously…..it’s not like he’s wasting away, eh? He’s quite the chunk!

He has the sweetest personality and is so happy and squish-able and lovable and we are just so thrilled he is ours. (I just wish he’d sleep a little more consistently – he can….it’s just very hit and miss and I think that more sleep would make this whole situation just a little easier to handle.)

All said, we are doing okay! I wouldn’t say that things are the MOST AMAZING EVER, but we are surviving. One day at a time, we are making it through this…….A lot of that is due to you and your prayers, encouragement, love and support……we are so thankful to you all.

Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys.

2 thoughts on “15 out of 56”

  1. Oh Judah! You sweet little chunk. Hope he starts sleeping for ya…and maybe eating a little bit, too. Praying for continued wellness and lots of good feelings for Geli. Love you!

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