Ally

Where to begin?? Processing everything that has happened in the last two weeks has been a challenge. I wanted to document this for later in Ally's life when we can look back on this experience with thoughts of gratefulness!! I think the best way to remember this roller coaster is re-read the email updates.

I honestly cannot express to you how much your prayers have meant to us. We are blessed beyond measure by our family and friends. We have THE BEST support in the world, and it's been so encouraging to read emails and texts of support and prayer every day...so thank you!

We are also incredibly blessed that Ally is going to be just fine and have a normal, happy, wonderful life. I know that is not always the case and I will forever have more compassion and empathy for children struggling with cancer and blood disorders. It's indescribable how it feels watching your child get a treatment that makes her so ill. And we only did it for a weekend. It's horrible and I hope we never have to do it again. I know more about platelets, plasma, and children's blood disorders than I ever dreamed, and our emotions have been all over the place. We are tired and frustrated and joyful and relieved all at the same time. Let's start at the beginning two weeks ago....

Update on Thursday, Feb. 9th

Hey friends,

I just wanted to give you a quick update on what's going on with our baby girl. So sorry for the email, I know I haven't had a chance to call everyone personally so please forgive me for that!
Ok, so basically Ally has been super duper tired lately- more than just her typical growing spurts -and so while we were at her well child check last Friday I mentioned that to Billy. He looked at her, and thought she looked rather pale and sent us for blood work. He thought she was possibly anemic. We got those results Tuesday and they showed she wasn't anemic but her platelet cell count was low (74). Since she hadn't been sick with a virus lately that we knew of he assumed this was a lab error and wanted us to re-do her blood work. We repeated the test Wednesday and her platelet level came back even lower this time(52, normal is 150ish for her). Her white and red blood cells were not where they should be either and so this was for sure not a lab error but something.
Last night, Dr. Nesmith called with the news and told us he thought she had ITP(an abbreviation for a really long platelet disorder). He couldn't be 100% sure it was this, but the alternative was very frightening and we were really hopeful that Ally has this ITP thing. We repeated blood work again this morning and were hoping that her levels stayed the same. We were scared and praying and just wanting a 52!!!

We got the results back at 11:30 am and her level was 62---which is a HUGE PRAISE!!! Hopefully this means she is on the way back up! There was also evidence of new bone marrow cells, and NO evidence if leukemia cells which is another HUGE PRAISE!!
Basically we repeat blood work again tomorrow morning and hope to see a 62 or higher and we're in the clear. If it's lower for some reason she may need treatment but should have a full recovery and be back to her pink-checked fun-lovin' self soon.
I know that the Lord was protecting our precious girl and believe me, we do not take that for granted at all. Last night was just plain awful getting uncertain news and not being able to do one thing about it.

We have had a pretty rough few months with my pregnancy, one year anniversary of Mark's dad, Ryan's bizarre migraine symptoms and now this. We are seeking prayer and continued protection and I know my Supper Club girls are my go-to prayer peeps!!! Thank you for being such sweet friends and please continue to pray for Ally's count to be back to normal!
Love y'all,

Update on Friday, Feb. 10th

Great news, her platelet count is holding at 64 :))) thanks so much for all your prayers and emails! We don't have to go back until Thursday next week. We are very relieved and hoping for a calm weekend.

Love,

Angie

Update on Feb. 17th 2:00 PM

Hi girls - I wanted to send an Ally update on Angie's behalf. They went in this morning for what they thought was a fairly routine follow up just to make sure Ally's platelet count was continuing to climb, but unfortunately it had dropped to 10. You may remember from her previous email that at 40 they need to be hospitalized. Needless to say this was unexpected and very alarming! They retested the count and got 8, 10 & 17. The good news is her white and red blood cells are still normal (this would not be the case with leukemia) so Billy is still confident that it is ITP. However, they will be going to Scott and White in Temple to be admitted there and come up with a treatment plan with Dr. Grayson. They will be staying on the children's cancer ward (we think). Please pray for Angie and Mark and for Ally that whatever this is she will be healed. They are getting packed and heading to the hospital as I type this, Mom and Dad will meet them there. As we know more I'll keep you posted.

On a completely selfish note, Kacey and I both have strep and while we want nothing more than to be in Angie's pocket right now we will have to keep our distance until tomorrow.

Thanks for your prayers and love and support for the woods.

Caryn

Update on Friday, Feb 17th 8:00 PM

Just talked to Ang, the doctor at Scott and White also thinks it is ITP which is good news. It can be treated with plasma or steroids. He recommended plasma so that is what they are going with. They will start the first dose tonight (it is an eight hour treatment given via IV) and then do a second treatment in 24 hours. After the second treatment they will retest her platelet levels. They are in room 416. When I called Ally was dancing around the room in her new nightgown so thankfully she has been a trooper!! But, she is about to get hooked up and won't be able to move around quite as much. The plasma can have side effects, headache, nausea, hives etc. so pray for minimal issues from the plasma, and obviously to get her count UP UP UP!

Thank you!

Caryn

Update Saturday, Feb. 18th 2:00 PM

Hey my prayer people!!

What a worldwind hour: Dr. Greyson now believes that Ally has a condition called macrothrombocytes --basically giant platelets, so her counts have been off since the very first blood draw two weeks ago. This is a condition she was born with and there are various things that this could mean. Basically this is great news and will not need another IVIG tonight. To confirm what this exactly means we'll come back Tues. and do more blood here and it'll be sent off for genetic testing. In other news, I left the hospital for two hours in which time Ally has been projectile vomiting and has a major headache, so pray she gets better from the treatment that she didn't need! She's now asleep in her bed but hearing her screams as I race down the hallway was pretty horrific...

We should be able to leave late tonight or in the morning as long as these horrible side effects get better.

Obviously this news is fantastic and we are hoping this is accurate. We've had a LOT thrown at us the last 15 days and there is still no answer to her fatigue. Please continue to pray for our sweet princess. I cannot begin to express to you how amazing your texts, gifts, emails and prayers have been to us. I truly do not know how people do this without the Lord, and YOU have been his hands and feet for us.

Much much love,

Angie & Mark

Update Monday, Feb. 20th

We're home!!

We got released around 12:00 yesterday and you've never seen anyone pack up as fast as we did and get out of there. We were all very relieved to be home, and slept for 5 hours strait { sleeping in the hospital while 33 weeks pregnant is ridiculous}. This morning we are all four home and planning on a fun family day here!!

If our insurance approves the genetic testing we will go back Tuesday, to Scott and White and then wait 4-6 weeks to see exactly which syndrome Ally has. Dr. Grayson is extremely certain the diagnosis of macrothrombocytes is correct (meaning Ally has giant platelets) and under that umbrella there are 5 possible syndroms that Ally could have. Dr. Grayson thinks he's narrowed it down to May-Hegglin and hopefully this genetic test will confirm this diagnosis. Since it's an inherited gene mutation we will probably get Ryan and this baby boy tested at some point. Ally's platelet count will always be low...somewhere in the 50-100 thousand instead of the normal 150-450 thousand. But the 5 we got at the hospital was incorrect and once the pathologist looked at her blood under the microscope he diagnoised her with Macrothrombocytes. Hopefully this would only be an issue if she were to need surgery later in life. She'd probably need a platelet transfusion but other than that the May-Hegglin shouldn't interfere with her life in any way. I have read that some children with this mutation/syndrome suffer from hypothyroidism which could explain her fatigue....but that is Dr. Angie Wood's research and not information from Dr. Grayson. I think until this diagnosis is confirmed through the testing we'll just wait and see and hope that her strange intermitten fatigue improves!

Again thank you ALL for being amazing friends. A special thank you to Honey who stayed with Ally last night so I could sleep...I did not want to leave but was "encouraged" by everyone to go lay down and I am grateful she was there to stay with her.

This verse is one I cling to: Psalm 27:1-3

"The Lord is my light and my salvation-whom shall I fear? The Lord is the stronghold of my life-of whom shall I be afraid? When evil men advance against me to devour my flesh when my enemies and my foes attack me, they will stumble and fall. Though an army besiege me, my heart will not fear; though war break out against me, even then will I be confident."

Love, Angie

My baby!!!