Keeping 6 other children cared for and occupied while I’ve been at the hospital with Ian and my sweet Baby Faith has been a challenge, but we’re all hanging in there…
My younger sisters, who both live nearby (we’re SO blessed to have family so close!), have been so gracious, and pretty brave. I mean, not everyone could handle several extra children AND several open bottles of paint in their house at the same time…
Our 6 others have had some fun days at various friends’ farms, trips to the zoo with friends from church, and days playing with their younger cousins. To them, the past couple weeks have been pretty fun, and I’m glad that they’ve had the distractions. Mega thank you’s to all of you locals who have been stepping up and stepping in to such and incredible help at this time. I can’t thank you enough, it’s been such a blessing to not be filled with anxiety over the rest of the children, but to just be able to trust that they’re in great hands, and to be able to focus on what’s been happening with Ian…
The LP looked good, they said “reactive non-malignant”. I guess they saw some residual cells that are to be expected after surgery, but they didn’t see any malignancies, if that makes sense. I guess the pathologist sent if off for a second opinion, and I was told that that could take up to two weeks.
The current issue is that Ian has spiked a fever. Anytime a patient spikes a fever after surgery, infection is a worry. There is the initial surgery sight and his portacath sight, as well as the possibility that he has aspirated… They’ve got 3 IV antibiotics on board, and we’re hoping they can nip this in the bud, whereever it’s coming from!
We discussed the possibility of proton beam therapy rather than traditional radiation, which I will discuss more soon if we go that route.
They are concerned about him not getting in enough nutrition, as eating hasn’t picked up much, and now he’s been in more pain the past few days, he just hasn’t been eating as much. It’s very common for patients being treated for medulloblastoma to require a feeding tube for supplemental feeding, especially as treatment gets rough with all of the nausea, etc… I asked about trying some good natural smoothies and protein shakes for now to get some nutitionally dense goodness into him, rather than some canned formula, and they were fine with that, so I grabbed some good stuff tonight to bring down to start our in-hospital-room smoothie bar tomorrow morning!
He’s going to be seen by the pain management team tomorrow, as we still haven’t been able to manage his pain, especially with his drug sensitivities… I’m really hoping they can find a good route to take with him, as he’s really stalled out on the rehab with feeling so crummy. He didn’t feel good enough for anything today- no occupational therapy, no physical therapy, not even speech therapy. He’s exhausted, in pain, experiencing almost constant dizziness, and has just plain lost his zest.
Prayer requests for Thursday-
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that the antibiotics would work quickly to knock out this infection
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that Ian could get good sleep, I really think it would help his energy level and overall pain levels
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that Ian could get enough good nutrition and not require a feeding tube, at least not yet, seems way too early in the game for that to me…
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that we would have wisdom in making treatment decisions, that the Lord would bring the right people with the right knowledge and skill
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that Ian could get back to the work of physical therapy, that his body would heal quickly and fully as he retrains his brain to work all of his muscles again
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that we could work out a workable schedule to get out homeschooling started up again soon
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that the other children would all stay healthy through this late summer allergy season, especially our asthma girls
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that the Lord would bless those who have blessed us so!!!
Thank you!!
{ 10 comments… read them below or add one }
Agreeing with every request in prayer, plus praying to keep you strong and healthy! You are a woman of strength!
Been thinking of you all so much…I want you to know that it is still my intention to send a little something to help you out in some way. Prayers and hugs…
Praying for Gods healing hands to touch Ian.
praying for you, cannot imagine. praying for him to get rest, and to be able to eat some of your smoothies. I agree food and rest make such a difference. I am so glad you have help. Please make sure you are taking care of yourself.
praying for the other kids.
Still praying here….
I am so glad to see they are allowing you to make your own nutritious smoothies for Ian. I have a degree in Nutrition and when in school we discussed the can formula they use for patients and it really is all about calories. I would love to see hospitals go the route of whole food nutrition but I know it’s harder to control calories {which they need a pretty accurate measurement in most pts} and more expensive.
Reading over your prayer requests this song came to mind-
“Our God is greater, our God is stronger, God you are higher than any other….our God is healer, awesome in power, our God.”
Praying for you today.
I’m so sorry. This is a road I know you would have never picked. Yet know that God loves you (and your family). He is good. His mercies are new every morning. And when you are too weak to walk, then He will carry you. He is strong. Prayers continuing.
PS – One of things I’ve found most helpful lately is keeping the praise and worship music going continually, constantly. Especially helpful for us was the song by Matt Redman, “You Never Let Go.”
Here is a website for blenderized diets: http://blenderizeddiet.com/
It was started by a mom that I’m a FB friend with. Her daughter was born with the same esophageal condition as my daughter. I’m going to guess that some of these recipes may come in handy, regardless of whether or not you end up needing a g-tube. And, if you have any questions about tube feeding, feel free to contact me. Lily only had hers until she was about 4. (We quit using it at 3). (I did formula in it because that’s what I knew to do at the time. Also, her gut wouldn’t tolerate regular food in large amounts because it didn’t know how to digest it.)
Going through something like this makes you really *see* God’s blessings up close and personal. It’s almost like you’re living life in slow motion, while everyone else is running around at a rapid pace. You feel emotionally overwhelmed much of the time, but God is so close you can hear Him whispering His comfort in your ear.
My thoughts and prayers continue to be with Ian and your family. XXX
Continuing to pray for Ian and all of you.
Praise God there is no active cancer cells and praise God your other children are looked after.
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I know it’s all been very overwhelming, but I have such faith in Ian’s total healing. Our little friend Eli, who was diagnosed with medulloblastoma last November, did proton therapy here in our hometown. (Bloomington, Indiana.) He also suffered from PFS after his tumor resection, and it was several months before he regained his ability to speak. This week, he had his post-treatment MRI and the results are that he’s cancer-free! Now the PT & OT are about to really kick up for him. I can’t wait to share that same celebration with you all – the “All Clear” scan!
Please know that we continue to pray for you, for Ian, and your family for strength, peace and total healing. Sending you lots of virtual hugs,
Megan
Hi Ali.
I have a friend who had Stage 4 cancer with a large tumor in her neck over 10 years ago. She had a feeding tube for 1 1/2 years while going through Chemo etc. She was able to use that tube to pump in a lot of good nutrition, superfood, barley green etc. that she never would have been able to get in otherwise. She feels that GOD used it mightily to help and strengthen her body.
I would encourage you that if Ian does get a g-tube it is not permanent, and could be a great enhancement over what he could do orally. Don’t think of looking at your son with a g-tube, but of looking at your son with renewed strength. I know all these decisions are weighty, and I am praying for GOD’s wisdom and healing!