Well, I've been a bad blogger. I've been working on this post for several days, but naptime is only so long. Somehow five weeks slipped by and I've neglected to give any updates. I'll have to go back and fill in the gaps of our Thanksgiving and other holiday happenings at a later date. Hunter had his checkup last Friday in Houston. He is currently almost 8 months post transplant. Feels like 8 years to us!
After all the excitement of being released to go to church last checkup, we didn't really expect many changes this month. I don't think I mentioned this on my last post, but Hunter had a little sore inside his nose at our last visit to Houston that had been there for several weeks. They wanted him to get it checked out by an ENT in Abilene just to be safe. It was most likely an ingrown hair (he lost his nose hair from chemo) that got a little infected and he was put on an antibiotic for two weeks. His nose cleared up quickly, but this particular antibiotic is hard on your marrow and his bloodwork has shown this.
In the past month, Hunter's hemoglobin has declined from 12.4 to 10.2. Hemoglobin is the component of blood that carries oxygen all throughout your body, and is what Hunter's body was destroying in June that caused him to spend the month in the hospital. He is still above the 8.0 mark that calls for blood transfusions, but we would love for prayers that this number would start climbing. Our doctor said that she wasn't overly worried, but if it didn't start going up soon would probably start Hunter back on steroids. As you can imagine, this was not the news that we wanted to hear. It felt like we've been rocking along pretty steady, and this particular checkup felt like a setback, even if those words were never used.
To be perfectly honest, this last five weeks since Hunter has been taken off steroids have been pretty physically demanding for him and our family. He is currently in quite a bit of pain. We've heard theories that his body pain could be slow healing nerve damage from the chemo that was masked by the anti-inflammatory benefits from steroids, or that his pain could be caused by long term high dose steroids. Either way, every joint and ligament from his shoulders to his feet are aching. If you'd ask him how he feels, he'd probably say something along the lines of "great" or "feeling pretty good." But the truth is that pain wakes him up in the night, he climbs out of bed in the morning hurting, and by mid-afternoon he can't hardly stand to be on his feet any longer. I don't share all this for sympathy, but rather because if this journey has taught me anything, it's taught me the power of prayer. Keeping our struggles to ourselves hasn't really worked very well. Humbly asking for you to join with us asking our Father for healing is all that I know to do. I am so ready for Hunter to be a full participant in our family life again. Instead of climbing into bed when he gets home from work, I long for the days when he can wrestle and play with the boys again without paying for it later by excruciating pain. It's hard to try and be both mom and dad to three active little boys, to solely take care of the responsibilities of the house, to be attentive to Hunter's needs, and to somehow get everything ready for Christmas.
If I sound worn out in this post, it's because we are. I'm not going to lie, if you asked me before transplant what our life would look like at almost 8 months post-transplant I would have said it would be back to normal. Reality is that it's not. Our kids are still isolated from the general public, Hunter has just enough energy and stamina for a few hours at work, and his team still has to keep a close eye on his bloodwork. I am so ready to be rid of the stress and worry that I feel like I've carried for so long now. Hunter is ready to feel better. Don't get me wrong, we have not and will never forget how BLESSED we are that Hunter has been healed of CGD. The support that we have received has been amazing. God has answered millions of prayers for our family. But friends, this has been a long journey and we have a little few more months to go until he is off his rejection medicine and the risk for infection that goes with it. Hunter caught his first viral infection since transplant Monday of this week and kicked his cough after a couple days. It truly amazes us that Hunter's body can fight illness like it was designed to do for the very first time.
When we made the decision to blog about transplant, I wanted it to be honest and real. That's not always pretty, but nevertheless it where we are right now. I am grateful for an outlet and someday will look back on our transplant and appreciate the journey. But as for right now, we would love your prayers for renewed strength and healing from pain for Hunter, for patience and endurance for me, and that Hunter and our family can stay free from sickness. We have much to be thankful for as we celebrate our Savior's birth this month!
In the past month, Hunter's hemoglobin has declined from 12.4 to 10.2. Hemoglobin is the component of blood that carries oxygen all throughout your body, and is what Hunter's body was destroying in June that caused him to spend the month in the hospital. He is still above the 8.0 mark that calls for blood transfusions, but we would love for prayers that this number would start climbing. Our doctor said that she wasn't overly worried, but if it didn't start going up soon would probably start Hunter back on steroids. As you can imagine, this was not the news that we wanted to hear. It felt like we've been rocking along pretty steady, and this particular checkup felt like a setback, even if those words were never used.
To be perfectly honest, this last five weeks since Hunter has been taken off steroids have been pretty physically demanding for him and our family. He is currently in quite a bit of pain. We've heard theories that his body pain could be slow healing nerve damage from the chemo that was masked by the anti-inflammatory benefits from steroids, or that his pain could be caused by long term high dose steroids. Either way, every joint and ligament from his shoulders to his feet are aching. If you'd ask him how he feels, he'd probably say something along the lines of "great" or "feeling pretty good." But the truth is that pain wakes him up in the night, he climbs out of bed in the morning hurting, and by mid-afternoon he can't hardly stand to be on his feet any longer. I don't share all this for sympathy, but rather because if this journey has taught me anything, it's taught me the power of prayer. Keeping our struggles to ourselves hasn't really worked very well. Humbly asking for you to join with us asking our Father for healing is all that I know to do. I am so ready for Hunter to be a full participant in our family life again. Instead of climbing into bed when he gets home from work, I long for the days when he can wrestle and play with the boys again without paying for it later by excruciating pain. It's hard to try and be both mom and dad to three active little boys, to solely take care of the responsibilities of the house, to be attentive to Hunter's needs, and to somehow get everything ready for Christmas.
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| Hunter is looking more and more like his pre-transplant self! We just got back from my cousin's wedding in San Antonio. |
When we made the decision to blog about transplant, I wanted it to be honest and real. That's not always pretty, but nevertheless it where we are right now. I am grateful for an outlet and someday will look back on our transplant and appreciate the journey. But as for right now, we would love your prayers for renewed strength and healing from pain for Hunter, for patience and endurance for me, and that Hunter and our family can stay free from sickness. We have much to be thankful for as we celebrate our Savior's birth this month!
3 comments:
We will gladly be praying for your family.....you are a wonderful wife & mother. Praying for peace and strength for you momma.
Thanks for being real. I have been praying about the hemoglobin issue the last few weeks and I know there is no way for that to not send shockwaves through each of you. Just because the 'stache is gone doesn't mean our prayers are! We love you and trust that God will see you through this, but please know that we know we are his hands and feet as he does.
Here's to higher hemoglobin results, thanks for the bump up this week, and here's to more good news in the future.
Most of all, here's to all of those precious to us that suffer daily pain to find relief and release to live life here with those they love with joy and freedom.
From the Warehouse
We think of you guys and pray often. You are one strong woman and I admire you very much for your endurance and reliance on the Lord. You are an example to others more than you know. We hope you guys have a great Christmas!!
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