Makhi and I have return after a LONG 3 days. The flight was OK although I did not realize how hard it would be to keep Makhi entertained during the flights and all the lay overs..... The hardest thing would be yesterday during his visit to see Dr Pranztelli. The LP was hard on Makhi. The needle fell out of his port again which is so painful. This has been happening allot. I truly believe there is something wrong with the port. It has shifted allot since it was placed last September and it could be because he has grown so much. I will have this checked out by the Paediatric Surgeons.
Well I will give you the good news before the bad. The LP results show that Makhi's B-Cell have come back BUT only in the blood not the spinal fluid so the Rutuxins has done its job.The bad news is Makhi's T-cell levels are still way off.At this point in the game Makhi's T-Cell Levels should be back to normal or close to it but that is not the case. So now we are looking at doing 3 rounds of Cytoxan(Chemo)but before we do anything we have to wait for ALL the test results to come back. Dr Pranztelli will call me in about 2 weeks and then we will make our final decision.
Dr Pranztelli called me last night at the RMD house to share the test results with me and he believes the T-cell levels is the reason for Makhi's set backs. He feels he has regressed and so do I it is just so hard for me to except.
Yesterday when I was with Makhi in the recovery room I think I may have lost it for a min. As I sat there in that chair holding my son and listening to his cry I was just sooooo mad all I could do is cry. I just wished this would all go away!!! How much does one child have to endure? Why did this happen to my son? How long will this go on? Will he ever live the life of a normal child? Will he ever be free of all the pokes and surgeries and doctors visits after doctor visits infusions and shots?
After talking with Liz (Dr P's) nurse I felt a little better. OMS is long road and there is no quick fix and it could be along time until Makhi is completely in remission without medicine. So all we can do now is pray to God that he watches over my son and gives us all the strength, guidance and wisdom that we need to fight this uphill battle of OMS.
Makhi has IVIG all day tomorrow and then he starts school on Friday.
That is all for now...Thanks you all for checking in on Makhi. Keep him in your prayers!!!
ANOTHER PAINFUL DAY
FLYING HOME
5 comments:
I am so sorry:( I don't even know what to tell you besides I'm here if you need to talk..I know how bad it is receiving news that tells you your child isn't getting any better:( I wish you guys the best of luck with the treatment in the near future. You're in my thoughts and prayers....
-Jodi Vollbracht..mommy to Travon
Oh my tara i am so very sorry. I will for sure pray for you and your family for a fast recovery and everything to finally be over. You need anything please dont hesitate to call me ok. We luv you guhys very much. I will be praying for makhi..Tomorrow I will call my mother in law to start a prayer chain for him ......Your in my thoughts and prayers..
As Makhi's Nana I would like to thank everyone that keeps in touch with the family. All we can do is pray and keep the strength through these times. Thank-you again
Glad you both are home and I hope the Cytoxan does the trick for Makhi. We had very good results with it, let me know if you have any questions I might could help you with. Make sure you have some Zofran for nausea on hand-it helps SO much. Love to all of you, keep the faith.
Debbie & Connor
I am so sorry to hear about your set back. I have wanted to write you for so long. The support you have shown for my son and what we have gone through has meant a whole lot to me. I will be praying for your son and for your family. I know that the stress something like this puts on a family can sometimes be overwhelming. I have "lost it" for a lot longer that a minute many times. If you ever need to talk or vent I am always here, you know my e-mail address. You are in my prayers.
*Kim Stockschlader...mom to Connor*
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