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Success after IF
LCB34
member
Kate Update
LCB34
member
We got the biopsy results back and still have no answers.
Everything is very detailed and confusing but, the majority of the test run came back negative. However, her bone marrow does show low production of the cells that create neutraphils and the cells that create platelets.
Also, all of the viral tests run on her bone marrow came back negative.
One of the best Pathologists in the world reviewed Kate's slides (side note - I am officially freaked out by the experts that are being brought on to her case - thankful - but freaked out that these medical geniuses need to be consulted about my child) and had a genetic test he wants run. Blood will be drawn tomorrow and it will take 6 weeks to get results.
Kate is also being tested for cystic fibrosis on January 20. They are also running test for markers of mitochondrial issues that same day.
At this point, the hematology team is looking at the rare, obscure issues. Most of them are not curable and a lot of them are not treatable.
We will most likely be meeting with a geneticist in the next few weeks.
Our hematologist will be heading up a meeting with 25-30 doctors in early February ? it will be a mix of hematologists, geneticists, GI doctors, immunologists, and pathologists. They will be looking at all of her lab results, her biopsy slides, and symptoms to see if there are any other ideas about what is going on.
They are also now trying to connect her GI issues (severe reflux, delayed gastric draining, severe protein sensitivities) and hematology issues.
I never thought I would have these thoughts but right now a part of me is thinking that infant leukemia would have been easier. Survival rates are high and it is treatable. You know you are at a low place when you wish it was *just* cancer.
Oh, and this is the least of our worries but we are back to preventing. With the high chance of this being genetic, I cannot chance having a surprise BFP only to have another sick child.
This discussion has been closed.
Re: Kate Update
After 2 rounds of IVF & 2 rounds of FET, we were blessed with identical twin girls!
I'm sorry sweetie. I have no words except Kate will be in our prayers. Hang in there and keep us updated!
God Bless!
"I have four children. Two are adopted. I forget which two. -Bob Constantine
"All for Love,' a Saviour prayed 'Abba Father have Your way. Though they know not what they do...Let the Cross draw men to You...."
Oh I wish you'd gotten some answers. I am so thankful you have such an amazing team on this, but I can only imagine how scary it must be to know you need the pros. You will continue to be in my thoughts. I so hope you get some answers (and better yet, some solutions) very very soon.
Please let me know if there's anything I can do.
Amber
TTC since March '06
MFI, LPD, possible PCOS
3 chem pgs * m/c identical twins at 9w 10.06
IVF w/ICSI #2 - beta - 187! (9dp5dt), beta - 367! (11dp5dt)
IVF w/ICSI #3 - it's a girl!
My IF Blog: Between the Lines
My Parenting Blog: Letters From Your Mama
Oh hon, I'm so sorry. ((HUGS))
Not being able to get answers is so incredibly scary and frustrating. I totally understand what you mean about wishing it was infant leukemia only because it's a known quantity and treatable. The unknown is so gut-wrenching.
You guys in my thoughts, always.
Thank you IVF for our little miracles!!
Are her blood counts indicative of CF? My DH's cousin has CF and is leading a very full, relatively healthy life (he's 16). Fingers crossed for Kate.
At this point, the hematology team is looking at the rare, obscure issues. Most of them are not curable and a lot of them are not treatable.
Oh dear, that's scary. Are they all dire conditions??
I'm so sorry you don't have answers. How wonderful that you have the best of the best consulting with each other on your precious daughter (even though I certainly understand why you wish they weren't a part of your life right now!).
As for now, is there anything they are able to do to try to get her blood counts to normal, or are you just going about life as usual?
Hoping, hoping, hoping for answers for you in the near future...
LO #1 - 1 unmedicated/self-monitored IUI w/ donor sperm.
LO #2 - 1 m/c, 2 BFNs, 4th IUI worked (unmedicated/self-monitored with new donor sperm).
Life is beautiful!
At first, I wanted to say yay for negative results, but the more I read, well...the unknown just sucks. It sounds like they are taking a very active approach to getting answers.
My heart goes out to you. We are all here for you! Big, big hugs to Kate, you, your DH and your family. I will pray for you.
Married 8.13.2005, M/C 12/8/06- 5 weeks, M/C 2/27/07- 7 weeks, M/C w/ D&C 8/10/09-6.5 weeks *Charles Lawrence born 5/2/08 @ 3:14am, 7lb 8oz, 20.5 inches. Clomid, Crinone and baby aspirin. *Alexandra Claire born 9/14/10 @ 9:52am 6lb 14oz, 20.5 inches. Femara, Crinone and baby aspirin.
Seasoul - several of the senior hematologist have seen CF present with GI issues and unidentified blood issues. Lung issues usually don't come until a bit older (according to these doctors). The test is easy - it's a sweat test - so we are moving forward with it so we know.
The specific genetic issue we discussed today is pretty scary b/c as of now, there isn't any type of treatment. You just live until it impacts you so much that you can no longer function.
A lot of the others are issues that have a big range as to how they impact a patient at any specific time.
I'm sure there are a few things that are not as severe but the issues brought up today are not things I want to be dealing with.
TTC #1: IUI #2 = BFP , Betas 550 (16 dpiui), 1523 (18 dpiui)
Hypothyroid, LPD, FSH 13.0, TTC 2 yrs B4 BFP
TTC #2: FSH 23, AMA, IUI 1, 2, 3 = BFN, IVF #1 = MC
IVF #2 = BFP - Betas 194 (14dp2dt), 366 (16 dp2dt), 841 (18 dp2dt)
(vanished twin ~7 weeks)
Of course not. *sigh* what a terrible situation to be in... If they are as perplexed as they are, I wonder if it's within the realm of possibility that the condition will simply improve on its own. Stranger things have happened!
Wishing all the best for you and your family.
LO #1 - 1 unmedicated/self-monitored IUI w/ donor sperm.
LO #2 - 1 m/c, 2 BFNs, 4th IUI worked (unmedicated/self-monitored with new donor sperm).
Life is beautiful!
I am so sorry that you didn't gain any clarity yet on Kate's situation. While it may be scary to have so many specialists involved in your child's care, I am so happy to hear Kate is getting the attention she needs and deserves.
I'm hoping you get some more information and some peace of mind very soon. (((hugs)))
I am so sorry that you still have no answers.
I will keep sending you guys all of the positive vibes I can.
I hope all of these extra tests give you some answers.
Because we're fancy like that.
After a loss at 13wks and years dealing with IF and failed treatments (3 failed IUI and 1 failed IVF), we have been blessed with DS (surprise BFP) and now his little sister (2nd round of clomid and TI) on her way.
look at the birds | bless this food
Oh honey...I am just so broken up about all this uncertainty. I can only imagine how frantic and helpless you must feel. The good news is that you have a team of specialists - experts in their field - who are going to get to the bottom of this. The bad news is that you have to deal with this at all.
Hugs to you, DH and most especially to Kate.
((((hugs)))) I wish there was more to say. Would you mind if I mention Kate to my husband? He's a prof of Immunology and focuses on innate immunity and some obscure diseases. actually he just simply knows a sh!tton about immunology and might have some totally oddball ideas.
An investigator that I work with here is exploring ways to use cord blood transplants to treat neutropenias. While I agree that "just" leukemia is easier to understand and even treat with bone marrow transplants - please know that there are more treatment options for immunopathologies - even obscure ones, on the horizon every day.
Just keep holding tight to your precious girl. The answers will come.
I am a runner, knitter, scientist, DE-IVF veteran, and stage III colon cancer survivor.
TTC since 2005
missed miscarriage nov 2006- 4 failed clomid cycles-
3 failed femara iui cycles-
moving on to IVF oct 2011
ER nov. 7th
tansfered 2 blasts on 11/10
lots of +hpt!!
beta #1 on 11/21= 50.4
beta #2 on11/23= 90.8
another miscarriage 12/23
moving on to Round 2 of IVF with an auto immune dx
ER 4/23-retrieved 12 eggs
ET 4/28 3 transfered
Beta #1- 356
Beta #2- 870
Gesh, I am so sorry you are having to go through all this and stil have no answers. My thoughts and prayers are with you....(((HUGS))))
After 21 cycles, and severe MFI, we finally did it with IVF #1 w/ICSI! Nico arrived 12/3/08!!!
TTC for #2: IVF w/ICSI #2-4/17/10-BFN; IVF w/ICSI #3; 7/4/10-BFP!!! Beta #1- 96; Beta #2-528; Beta #3- 7371; 6w,5d-blited ovum=D&C
IUI #2 1/10/11-BFN; IUI #3 2/18/11-BFN
IVF #4 w/ICSI & PICSI ER 5/13/11, ET 5/1/118-BFP!! Natalee arrived on 1/23/12!!!!
Pregnancy Blog: Miracles Can Happen
Parenthood Blog: The Adventures of Nico & Natalee
I'm so sorry you are all going through this and haven't found any answers. My heart dropped reading your post. I hope all the experts find a (very treatable) reason for Kate's issues soon. ((HUGS))
Clomid M/C 8 weeks 2/08 *IVF #1-DD born 3/09
*Surprise BFP-T18 baby lost at 13w 1/10 *FET #1-DS born 2/11