Thursday, May 7, 2009

Appointment with All Children's

I have been putting this off since last night because I just wasn't quite sure of what to say. In a way, I knew what kind of response we were going to get from the doctor . . . but I was really hoping to hear something different, an easier solution to this masto thing.

Isaiah's appointment was less than encouraging. The doctor basically said that there was nothing more we could do for Isaiah apart from treat the reactions as they happen. There is nothing that will really help to control the reactions, we just have to hope that they don't get any worse or more frequent. A while ago, I mentioned another drug that might help Isaiah: Xolair. Xolair is no longer an option for Isaiah - Isaiah's sensitivity is just too severe. The doctor also explained that after one year of shots is over, within three months the symptoms will return and could be worse than they were to start out with. The only way they will put Xolair back on the table is if Isaiah's reactions become worse or more frequent . . . it will only give us one year of peace until we can figure something out. Obviously, we would have to resume the injections within 3 months if we can't figure out what to do next.

Another glitch, so to speak, is that we can only use Xolair for 3 or 4 periods of treatment. After that, the shots become too risky. Some of the side effects are also not so nice either as they can cause hair loss and such. His thought was that what's the point in putting Isaiah through all of that when they won't help to begin with. He's also at the point where the shot could cause things to get worse very quickly - he could react to the shot itself (he is that sensitive).

Basically, we will only treat the reactions when they come up (back to where we were). He also mentioned that he thinks the reactions Isaiah had a couple of weeks ago weren't from the anesthesia, but more likely from the procedures themselves - the biopsies scratched, his mast cells reacted. The reactions were held off by the Decadron (steroids) long enough not to happen during the procedure, but his body was still in attack mode once they wore off.

The doctors words felt like weights, and I felt like I was hit in the stomach. He didn't say Isaiah was going to die anytime soon, but said that the reactions are very, very serious and can cause things I don't even want to think about. The fact that Isaiah took longer to recover from the second episode wasn't surprising to him, but concerning - his body still wanted to attack something that didn't exist and we were forcing his body to stop.

His diagnosis was much more firm this time and he added that Isaiah is also "just highly allergic and his mast cells are just too sensitive." As far as a bone marrow biopsy, he said we just won't go there unless Isaiah's labs ever show that it needs to be done. Right now, there is no need to upset Isaiah's system unless it's absolutely necessary.

For now, I'm trying not to think about it all too much - as a good friend said, the details are just details, the only thing that really matters is what God has in mind and what He is going to do. God has Isaiah in His hands; He has this under control and He knows what He's doing. I also know God has more plans for this little guy in this life. Isaiah isn't suffering, and he is (for the most part) very healthy.

Isaiah is eating well . . . steroids can do amazing things! He has even gained 5 pounds back that he had lost! He doesn't look as much like a skeleton anymore. =0) He even has some chub in his cheeks, again! =0) He also seems to have an endless supply of energy - along with a smile, twinkle in his eyes, and a giggle added to it! He does have periods of crankiness, and when he is cranky, he is almost impossible . . . but the smiles make up for all of it. I can't tell you how many times I've heard someone say, "he looks so healthy." Even his local allergist loves to say that. Thankfully, he does. In fact, he looks so good that you wouldn't even think he has masto or these allergies that are worsened by the masto. God has done an amazing thing with Isaiah - he shouldn't look this healthy.

This scripture showed up in my e-mail a couple of days before our trip to All Children's: "Be joyful in hope, patient in affliction, faithful in prayer" (Romans 12.12). There is peace and joy in the hope He gives . . . as much as I want to fix Isaiah's health, I know there is nothing I can do except be patient . . . and I'm not giving up on praying for Isaiah's healing. Thank God He is God and knows what He's doing! =0) God's plan and His way of doing things is much better than anything I could ever want or do. We can walk this road kicking and screaming at the top of our lungs, or we could walk with peace, hope, joy, and patience and learn something along the way. Honestly, I find something else to be thankful for every day I get to spend with Isaiah. Every day he is healthy is because of God . . . every day Isaiah lives, I live, you live is because of God. I'm so glad He holds the future. I can't help but be grateful that God has this under His control.

Isaiah 58.8-9a: "Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard. Then you will call, and the LORD will answer; you will cry for help, and He will say: Here am I."

Ephesians 3.20: Now to Him Who, by (in consequence of) the (action of His) power that is at work within us, is able to (carry out His purpose and) do superabundantly, far over and above all that we (dare dare) ask or imagine (infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams).

Romans 8.37: Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us.

Romans 12.12: "Be joyful in hope; patient in affliction; faithful in prayer."

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