So the week started off with Alex having to go to the hospital/clinic to have his broviac line repaired. They had to put an IV in his arm. Alex was such a trooper. He was very upset about getting another "poke" but when it came time to put the needle in he did not cry or even flinch. The catheter broke on the first try too, so he had to endure two pokes. It was an amazing moment of pure bravery and courage.
Alex did not sleep well that night and was really exhausted all day yesterday. He asked to go to bed early last night but according to Steve, did not get a good night's rest then either.
Today we started the day with a return to OT/PT. Alex's therapists have coordinated overlapping appointments so that Alex only has to make one visit to see both of his favorite people. It was so great to see Alex laughing and smiling. He had a great time and so did I just playing with him.
Steve's sister and her family arrived today. We are so happy to have them here with us. Alex is loving having the boys around to play video games with him. We are looking forward to a great visit.
Today I woke with a sense of hope. A dear friend of ours made arrangements for her acupuncturist to come by to see if he could help Alex. He has had prior experience with brain stem tumor patients in the past. Before he examined Alex he told us the criteria that would need to be seen to know whether or not he could help. He talked about a vein in his finger and said if it is visible to this line then there is nothing I will be able to do. During the exam, he showed me that Alex's vein is to that line. The consult ended soon after that but not before Alex bravely accepted his offer of two acupuncture needles to help him feel better. Afterwards he spoke to Steve and me privately. He reconfirmed that unfortunately there was nothing within his power to help Alex. I (stupidly) asked if he could tell how much time Alex might have and he replied, "perhaps two to four week; it is severe".
These words brought such a wave of sadness over me I was barely able to maintain my composure. I absolutely hate this. Again, I must say "IT IS SO UNFAIR"!!!
That's it. Alex wants to go outside and I am going to go with him.
Love and God bless.
G
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8 comments:
Gwen, it was SOOOO good to see you guys yesterday. I have not seen Alex look that good in a long time. To see him smiling and laughing (and standing, I might add) was just what I needed. Peggy and I had a blast! Needles may not be able to cure the bumps, but let's keep hoping that our prayers do! I can't wait to see you next week!
~Kerry
So sad that you had to hear such discouraging words. But we remain firm in believing that Dr. Jesus has resources far beyond the medical profession. Where man's skills leave off...His "super powers" show forth best. ALL THINGS ARE POSSIBLE to him who believes!! I am expecting Alex to become God's poster child for miracles. Never too late, too broken or too far gone. All our love....Dianne and Paul
I don't know where the saying comes from, but I think it rings true, "where there is love, there is hope" and it's so clear that you have that in spades. You're in our thoughts...Dianne, Craig and Josh
Gwendolyn and family,
we continue to have strong hope along with you. We think about you all everyday and pray for you often. Thank you for allowing us into your lives during this difficult time. It hurts that we moved so far away and cannot see you. It helps to know you have such strong support from family and friends.
love,
joy and mike
Gwen,
I check your blog daily and have been thinking of you guys constantly. I have been fearful of leaving a comment, unsure of whether or not you would want to hear from me. Please know that I would do anything to alter the path you now walk, to put things back to the way they were. It's what I wished for, more than anything, while I was on that same path. While I don't have the power to change it, I do have some insight to share.
Please, Please hold onto your HOPE. Cling to it and don't let it go, despite what others may tell you. No one KNOWS what the future holds for sure. The hope is what will keep you afloat when it feels like your going under.
As much as possible, let others do “it” for you. Anything you can delegate to someone else is more time to spend with your family, especially Alex. Be with him as much as possible, and then be with him some more. Keep a camera with you and take as many pictures (and/or video) as possible. I know it seems strange to do it now, we generally do these things only during celebrations and times we are happy. You will never regret having all of these pictures and videos in the future, no matter what the outcome. You may, however, regret NOT having it.
Know that you are doing the best that you can under horrible circumstances (this is an understatement, I know!). All of the thoughts and feelings you are having, whenever you have them, are normal (even taboo thoughts like suicide).
Know that you will make it through this.
I know that you have a wonderful support group surrounding you, but if you ever feel the need to talk/cry/rage/plead etc. I am here to listen and understand.
All of my prayers to you and your family,
Melinda Steadman
(303) 485-2705 home
(303) 618-1015 cell
Hey ya'll. Just wanted you to know we have been anxious to get to a library on vacation to get some updates. Please know we are praying and thinking of you constantly. We are looking forward to some pottery time with you!
Love, Hallie, Sara and Jason
Gwen, please call if you want to cry or scream. I know I am not supposed to say this, but am sad too and simply going to hold on to the hope and prayers and good wishes for that wonderful sweet funny charming brave little guy!
Love
Sue
I am sending you hope and please know your family are in my thoughts.
Hugs from a stranger
Shantell
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