Abby with her "Bubba", GarrettFrom Michelle:
Thank you for the encouraging emails and comments. It has been a rough week and you all helped immensely.
Yesterday, I took Abby to see her oncologist. Her ANC (the number that represents how her immune system is working) was 6000 when we came home from Disney. It's now 1800, well below normalbut still not still not as low as it needs to be to kill the cancer cells that are hiding in her bone marrow.
Abby's headaches are more frequent and her eyes are losing focus because of the pressure on her optic nerves. Abby's doctors are watching her closely and getting her in to see the needed specialists.
If we stop Abby's chemo now, the cancer will overtake her little body. So even though she has signs that the pressure in her skull is too high, I had to give her two different chemos tonight. One was the chemo that is causing her intracranial pressure to be too high, Methotrexate. The second chemo is a nice little after dinner mint derived from Cyanide.
I have always had a love/hate relationship with Abby's chemo. There is no doubt that she wouldn't be alive today without it. For that I am forever grateful but for the last year and a half, I have been handing my baby girl poison that is weakening her body and causing pain. Everyday I feed my precious daughter healthy fruits and veggies, lots of water... ... ... ... ... ... and rat poison.
This evening I held Abby while she cried., tears streaming down her face. Two hours later, I handed her the very chemo that was responsible for her tears.
Because her ANC is too high, her docs will be increasing the amount of chemo we are giving her next week. I understand why, but I am dreading it.
If anyone has experience with pseudotumor cerebri, also called Intracranial Hypertension, I would love to hear any suggestion you have. Abby has taken Diamox in the past. Diamox was a complete disaster. I would love to find another medication that might help. If you know of any websites, medications, doctors or studies about intracranial hypertension caused by chemo, please let me know.
Would you pray that:
- Abby's cancer would be healed.
- For wisdom, direction and healing, as we try to help Abby with these side effects.
- That we would be able to make Thanksgiving and Christmas special for all of our children.
34 comments:
oh Michelle... praying for you all... poor baby
My heart is breaking for you! I just don't know what to say other than that I will be praying for you, Michelle, that God gives you all the strength you need and for Abby's healing. I'll also be praying for the rest of your family and for a great Thanksgiving and Christmas!
Will continue to pray for Abby and for Your strength as well as Brent's.
Tears in my eyes and down my cheeks for all of you, and trusting that God do something TOTALLY GOD for Abby even this weekend. WE are praying faithfully with you and for you Michelle.
HUGS with much love
Linda
I am praying for Abby and your family.
Hugs,
Amy
Oh Michelle....I'm praying. This is so heartbreaking but I remain hopeful that the Lord can make it better. I hope He will! (((Hugs)))
I am definitely praying for you all. Even as an adult, I couldn't take Methotrexate (for my arthritis) because of the excruciating side effects that I experienced. I couldn't even bend over enough to touch my knees.
That's neither here nor there though. I am really sorry for what you are having to do, Michelle. And I really wish Abby wasn't experiencing the horrible effects that medication can have.
Many prayers are with you. Hugs to Abby. God give you all continued strength and wisdom.
We have a son who is 17 now but when he was 12 he had Pseudo Tumor. It was horrible. We tried a drug called topamax and steriods. The only thing that seemed to do the job completely was spinal taps. Toradol helped the pain. Odd because it is not a big drug but it helped. Not sure if you can even do that. Our son was completely healed one day and we praise God for it still today. Praying for Abby to have the miracle we did.
No words of wisdom, but you are in my prayers.
I am so sorry this is so painful on so many levels. ;o( Hang in there. We are praying.
Praying...
Barbara :-)
Our whole housegroup prayed for your family and Abby last nite!!!
Michelle, I can't imagine going what you're going through. I guess it really defines the whole Love/Hate relationship. Abby is such a beautiful and precious little girl. I loved the picture of her as a 4 month old that you recently posted. I keep Abby in my prayers for relief from pain and for a full recovery. I'll pray for you, too, that God will guard your Mama's heart and help you do you you have to do. I hope that you'll have a peaceful, restful and healthy Thanksgiving.
Just shared this post on my Facebook page. I am praying!
Michelle, I meant to leave you a comment a couple of days ago but didn't have a chance - just wanted you to know that our family is praying without ceasing for all of you. Abby is so precious and we are hoping so very much that her doctors can find ways to treat her cancer yet resolve her intracrainial pressure. Blessings to all of you, and hugs to sweet Abby!
Still praying for sweet Abby.
stay strong, praying for answers, praying that the increase will not affect her and she will feel back to normal soon
so sorry to hear what Abby and your family is going through. Of course, I'm praying for all of you. Take care.
Our prayers are with you Michelle!
I am so sorry to hear that Abby is in this much pain again!
Big hugs and much love to you all!
Jill
Praying for you all!!!!
DEar Michelle;
Sending a hug and all of my prayers. Wish I could invite you over for tea, so we could pray hand in hand together.
We love you, your family and sweet Abby. Praying God heals her, gives you that wisdom and leads you on paths of righteousness for His namesake.
He is with you Michelle, He is with you in this valley. He will not leave you or Abby, as you are His pride and joy.
Kimmie
mama to 7
one homemade and 6 adopted
I'm so sorry your sweet daughter is hurting. Truly.
I just wanted to let you know that Sunday I'll be posting a link to your blog from mine. I'm putting up an entry encouraing my readers to help others adopt.
in Him Alone,
GfG
Still praying.
Michele,
No parent should ever have to make the decisions that Parents with kids that have cancer have to make. You and Brent are strong, Godly people and I know that with each decision you make, you have prayed about it first. Continue to let God lead you in the treatments for Abby. Abby knows that you love her and are only trying to help her feel better. It is just a shame that to do this you are having to use such awful drugs.
Sometimes God allows things to happen to us adults in order for us to turn to Him more. Sometimes these things that happen aren't too nice such as disease, pain, loss and more. These are not of God, but He does use them so that we can turn to Him more. This is like the meds you are giving Abby. They may be painful now, but for her to get better it is necessary for her to have them.
When we discipline our children, it isn't because we "enjoy" it, but because we want them to be the children that God would be pleased with. I know it hurts you to give Abby meds that you know may have the awful side effects, but just know that you really don't have a choice.... if you want to conquer this monster called cancer.
You and Brent are awesome parents and love all your children so much. I have grown to love your family via email and your sites.... just as many people have.
love and prayers for all of you..especially Abby.
Ann Stegall
Wake Forest, NC
Riggs family - may the Lord bless and hold each of you close to His heart. May you find strength, peace and comfort in knowing that His love is perfect and beyond understanding. He cares and loves each of YOU more than we can fathom. You have touched many lives and we are all blessed. As you struggle through this time know we are lifting you up in prayer and anxiously awaiting to see the post of a smilig Abby.
Praying for you all as you watch Abby suffer.
Praying that the side effects may subside!!!
Praying that you will have the strength to comfort Abby!!!
We are and will continue to pray for Abby and all of you...Love to you from the Morby's
Michelle,
Oh, how I'm praying for your precious Abby girl! I am also praying for YOU because it has to be so HARD to administer the meds that cause her pain, yet are saving her life. How difficult that must be. I have such compassion for you. I will pray that God would encourage your spirit and lift you up! I know He is mighty to save!!
With love,
Stacy
It breaks my heart that she's suffering so much. I had leaking spinal fluid last year that resulted in one of those headaches, and I bawled my eyes out. It is so painful. My heart goes out to Abby for having to endure this. I admire her so much...she is a strong little girl.
I was diagnosed with IIH in June 2009 and have had success with DIamox, however, I have heard many horror stories from others.
Suggestions on finding more info about PTC/IIH, other medications and any studies that may be out there:
1. dailystrength.com has a pseudo tumor cerebri group that has many members that have had the disease longer than I have and, therefore, have had a lot more experince with various treatments.
2. www.ihrfoundation.org is the only place I know of that is actively looking for a cure and better treatments for the disease so they may have info for you, and they are also really great about responding to any and all e-mails.
3. If you haven't already done this, create a "Google Alert" (That's how I found out about this blog) that will search the internet for "pseudo tumor cerebri". I have received a number of alerts about studies conducted about my disease because of the two alerts I created for this purpose (one for "pseudo tumor cerebri" and one for "idiopathic intracranial hypertension"). You will receive e-mails daily, or weekly with links to all of the mentions of your alerts around the web!
I hope this helps in some way. God bless your family. Best wishes for a wonderful holiday season!
:)
Praying for Abby, and praying for you all.
Praying for Abby and for your family.. About intracranial hypertension - have you ever taken Abby to see an osteopath who is familiar cranio-sacral therapy? Please look into this.
Ana
(Washington DC)
It makes me so sad to hear the pain in your blog, of havening to watch precious Abby, having so many nasty side effects, but you also hear the love, that you have for your sweet girl!! We pray for healing for Abby!!
(((HUGS))) and Prayers!
Love in Christ!
Terri
www.caringbridge.org/visit/jessegreen
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