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Babies: 6 - 9 Months
LCB34
member
Saying it means it is real...
LCB34
member
But, I need to get it out there so I can come to terms with our new normal.
Kate was officially diagnosed with a rare genetic type of bone marrow failure yesterday (congenital amegakaryocyctic thrombocytopenia) and we were informed that she needs to have a complete bone marrow transplant ASAP.
We obviously knew we were facing hematology issues but, I really didn't think she would be on the "worst case" end of the bone marrow failure spectrum.
We don't know a lot right now other than her diagnosis. I am waiting on the transplant team to give us a call so we can discuss details and such. Kate is being typed this week so that she can be listed on the national registry as soon as possible.
She will undergo chemo but it will not be started until a donor has been identified. We also don't know how intensive her chemo regimen will be.
We've got tons of appointments and tests while we sit and wait for a donor - an MRI, eye tests (this syndrome has some impacts on vision), another bone marrow biopsy, and more blood draws that I want to think about.
We are asking for any and all thoughts and prayers for Kate - and for Alex and I as we deal with this. Add Kate to a prayer list, mention her in your Bible study, please get the word out that my sweet girl needs to be covered in prayer right now.
While we are questioning why this is our cross to bear, we realize we are blessed. We have an amazing support system, we have a good outlook for Kate's future (pending no complications), and more importantly we serve a mighty God that will help us get through this.
We are also thankful that we live 15 minutes away from the top pediatric bone marrow transplant center in the country. Knowing that we can take a 2 hour break and go home, not to a hotel, is such a blessing.
Kate is a fighter ? she proved that a long time ago ? she will win, I just hate that she has to fight?
I will keep everyone posted as we learn more.
This discussion has been closed.
Re: Saying it means it is real...
YGPM in about 60 seconds.
The Mob Boss
Birth: 10lbs 11oz, 21.5 inches <> 1 mo: 14lbs 7oz, 23.5 inches2mo: 18lbs 15oz, 25.5 inches <> 4mo: 26lbs 8oz, 27.5 inches6mo: 29lbs 8oz, 30 inches <> 9mo: 32lbs, 32 inches12 mo: 37lbs, 34.5 inches <> 15 mo: 38lbs 6 oz, 36 inches. 20.5 inch noggin18 mo: 43lbs, 37.75 inches 21 inch head2yr: 47 lbs, 42 inches. 21.5 inch head. Woah.
my read shelf:
A + Life
Me:24 DH:27
TTC #2 since August 2011
DX: Low AMH 1.79 Mildly elevated FSH 9.9
1 month of Letrozole, 3 IUI's with Letrozole, All BFN. 1 canceled IVF cycle, BFN.
May 2013 IVF w/ICSI #1.5: Start BCP 5/8 2 pills a day. Suppression Ultrasound 5/29. Begin Dexamethasone & Lupron Microdose 5/31. Started Gonal F and Menopur 6/2.
ER 6/12 13R,9M,8F.
5DT CANCELLED due to moderate OHSS
5DT UNcancelled due to embryos not being capable of cryopreservation
Transfered 2 "poor quality" embryo's on 6/17
No frozen embryos.
Beta #1 6/25 6. Chemical Pregnancy confirmed. Beta #2 6/28 -1
Done trying
I cannot even begin to express how sorry I am to hear this.
Kate is most definitely in my prayers and I will pass the word around as often as I can for others to pray for your sweet girl. You are correct she is a fighter, she will overcome this.
Many hugs.
Wow, that's absolutely devastating. I'll pray for Kate to be strong and healthy and hope that a donor turns up soon.
Did you bank her cord blood privately? Have you and Alex gotten tested to see if you can be the donor?
Lot's of T&P!
Thinking of you, Alex and Kate, and I am so sorry you heard the worst case scenario. I hope that a match is found, she comes through with flying colors and you can put this behind you.
*hug*
BFP:11/1/11 EDD: 7/3/12 M/C:11/22/11 8w1d
BFP: 5/23/12 EDD: 2/2/13
Prayers for your family.
Remember that God wont give you anything that you can't handle.
I'm so sorry...I can't imagine what kinds of thoughts are streaming through your head right now.
God's peace to you and your family as you confront this illness.
BFP 11/29 - m/c @ 5w
Lots of thoughts and prayer your way!
I hope everything is alright.
Are either one of you a match, I am not sure you can give to an infant?
We are heading in a few weeks to get DS genetic tested. I am nervous.
Born 7lb, 15oz, 21-1/4, 2 mo - 12lbs, 14oz. 25", 3mo - 14lb, 4oz 26in , 4 mo - 16lb, 1oz, 26 3/4 in, 5 mo 18 lb, 4oz 27-3/4 in, 6 mo 28 3/4 in 19lb, 14oz