The Countdown is On…

This past Monday we were in at BC Children’s for another monthly chemo appointment. As of today, Angelica has 4 more monthly chemo appointments left until she is finished taking chemo and only 1 of those appointments will have a sedation procedure. This is SO exciting.

There is not that much that is new or interesting about the actual chemo appointment itself! Angelica goes in. They admit her and draw her blood. They give her the chemotherapy and then we see a Dr. and go home. At this point, as long as I don’t think too closely about the poison that they are giving her, it’s all very routine. I know that it’s a necessary evil and I’m so thankful that we are here and can get the medical help, but it’s still tough…..and that’s never changed from the day that she was diagnosed until now….

What’s been different about the last few appointments has been the issues regarding the bones. The news of Avascular Necrosis/Osteonecrosis has been tough. Dealing with how much constant pain Geli was in was so hard. She had a hard time walking, moving, dressing, doing her hair, bathing……Life was pretty tough and every report we were getting was pretty much preparing us that life would pretty much be like this and possible worse…..

Things started to change after our appointment with Dr. Brown the Pediatric Surgeon at BC Children’s. He gave us news that we received as god news….as positive news and in the middle of all the crap…it’s what we needed to hear.

Angelica is doing so much better. It’s not all butterflies and roses, but she is in less pain. She’s tired and her muscles are sore, but she is working SO HARD!

Geli is doing about an hour and half of physio a day…….on her own…..or mostly on her own…

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It’s pretty incredible. She is doing exercises 3 times a day – morning, after school and before bed. It’s making a HUGE difference. Instead of walking around like someone who is 90 years old, she is walking and standing more like a teenager. She is standing straighter and walking straighter. While there is still a bit of a wobble in her step, she looks AMAZING!

It’s exciting to see how far she’s come. Sometimes, it’s hard because she can’t see the change, but to us, looking at her and seeing what she can do now that she couldn’t do a month ago….the changes are astounding. For example, she couldn’t stand up in the kitchen to help with dinner or dishes for 15 minutes without being in pain and so tired. Now, she can do at least an hour. On Monday, she had the sedation procedure with the chemo into her spinal fluid (a Lumbar Puncture) and there has not been one day in the past 2 years that she has done anything other than lay around on an LP day. On Monday, she wanted to walk up to the store a few blocks away from our house to get something that she really wanted for dinner. It blew me away. So SO much different than a month ago……she also has SO MUCH MORE range of motion in her shoulder and elbow and it’s making a difference in the daily living things that she is able to do, like reaching for things up on shelves in the kitchen and doing her own hair.

She still requires help, but all of this change…..it’s only after ONE MONTH of exercise…..The physiotherapist at the hospital said she was doing incredible and our nurse COULD NOT BELIEVE how amazing she looked even all groggy after having the LP. She looked healthy and happy….in fact, more than a few nurses mentioned how great she looked.

It’s so great to see positive change and forward movement in this situation. We have our next appointment with the Orthopedic Surgeon on Tuesday June 14th….I’m looking forward to Geli going in and being in better shape than she was the last time.

One other AMAZING bit of news, is that the Physiotherapist at BC Children’s suggested that Angelica go THERAPEUTIC RIDING…..as in HORSE RIDING. Any of you who know Geli, know that she has been in love with horses for as long as we can remember. I have lost count of the number of horse calenders, horse bedding and other horse paraphernalia that Angelica has collected or wanted to collect over the years. To say that she was a horse fanatic is putting it mildly. Unfortunately, horseback riding has not been something that we’ve been able to do, but it has been something that Geli has wanted to do forever.

To have the Physio suggest that as another form of physio that Geli could go riding…..well, it’s pretty huge. Just talk to Geli about it and see the smile on her face when she talks about it….she has this amazing smile that just lights up her WHOLE ENTIRE FACE. She is SO excited! We’ve contacted the stable that does Therapeutic riding out here in Langley and have sent out referral forms to her Dr.s to get them filled out and as of last night we received them back so now we forward them to the stable and then set up a time and …………she starts riding.

What an amazing opportunity that is so perfectly picked just for her. What a blessing! We can see God’s hand in this.

There are other emotional side effects from this whole journey that we are working through and it can be tough at times, but there are a lot of things that are going so well. We keep praying and believing for miracles for Angelica’s physical body. It is so encouraging to be at a place where she rarely feels pain as opposed to the constant pain that she was in.

Thank you for your prayers, your encouragement, for your love, for your support. We couldn’t have done this or carry on without your support. We are so grateful to all of you.

Author: Patricia Culley

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

2 thoughts on “The Countdown is On…”

  1. you are in my prayers. every journey is one small step at a time. i am glad she will be horse riding it gives her something to look forward to and that really makes a big difference. praying for the siblings as well as they are affected by all this too. middle of dog sitting, cant wait to go home to warm apartment. feel like i am sleeping in dog house in back yard freezing at night time. hope geli will be well enough to go camping and have fun during the summer holidays. say hi to jon for me. and give geli a hug for me. just focus on one step at a time not 100 steps (makes a person feel overwhelm). love debra

  2. Dear Patti and Geli Just read your blog ,I am so happy to hear you are doing better Geli. I am sorry I have been so long in touching base with you. I have been pretty low in energy myself and now getting ready to go away. I have wanted to come in when Grandpa went for Chiropractor but just could not seem to manage it. So happy you are going to be able to go horse back riding. I had my horse my Grandpa gave me and I loved to ride her.. Grandpa is telling me it is time to come to bed. Would you believe I am almost packed and it is only Sat. night and we leave on Tues. I still have things I want to do but the important things are pretty well done Love you lots Grandma

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